tag:blogger.com,1999:blog-85808612040567591062023-11-16T06:10:59.443-08:00Requiem for a Limb....and the relentless pursuit of the NEW NORMAL ADVENTURE!Unknownnoreply@blogger.comBlogger26125tag:blogger.com,1999:blog-8580861204056759106.post-82837145043508971082017-05-09T15:09:00.001-07:002017-05-11T14:09:30.284-07:00A Tribute to Nurses...I often forget what it was like, having to lay flat on my back for three months while my spine and pelvis healed. I remember thinking to myself <i>How on earth am I going to get through another day?</i> Those of us who are or have been patients know what it's like to feel needy and hopeless, grasping for any shred of mood-elevating human connection to help bring us back down to earth. I remember well being a patient on the trauma floor, and despite being quite sedated and groggy from the morphine, I distinctly remember the relief I would feel every time I felt understood by my nurses, who were my life-savers during that time. Truth-be-told, I was one of "those" kinds of patients who did all of my research and was ready to ask every question I could think of of any medical professional who came into my room regarding the upshot of my injuries or prognosis. (After learning this, my surgeon even gave me strict orders to direct all questions his way. Oye, I must've been a real treat! 😉) I wanted knowledge and I wanted answers....but more than anything, I wanted to know that I <i>still mattered</i>, despite feeling like a broken lump of bleeding flesh with a questionable future. I was super fortunate that my nurses tended share my love of dark / gallows humor, that they were highly skilled and exceptionally compassionate....(even the time when my then four year old son couldn't stop poking my foley catheter. <i> Yikes!</i>) I had the chance to see first-hand how difficult the job is, physically and emotionally....and thought to myself many times, I could never do this job, but forever grateful for those who do.<br />
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<span style="font-size: x-large;"><b>This is Nurse's Appreciation Week...a time to reflect upon how touched we have been by those with a passion for caring for people's bodies, minds and hearts. </b></span><br />
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<b>Today I stumbled upon this TED talk</b>. It caught my eye because I happen to know the woman on the cover photo (a smiling nun holding the two adorable baby goats). Our family grew up going out the the <i>Villa Loretto</i> Nursing Center to visit and came to know all of the sisters--especially the head nurse and woman featured in the middle of this talk, Sr. Stephen. It's a great video highlighting the nursing profession...<i>I highly suggest watching it!</i><br />
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Of course, my sister and I thought Sr. Stephen was super cool because she was the nun with the roller skates AND a motorcycle! I think her compassionate spirit made a deeper impression on me however, as I chose Sr. Stephen to be my Confirmation sponsor in 1985. Fast-forward 33 years later...who ever woulda thunk that those lasting impressions would have wiggled their way into my heart after an extended stint in "patient mode?" Not only have I always deeply appreciated wholehearted folks with compassion and dedication, but especially people who extend themselves in the medical profession, where the stakes can be high and the pain profound. These are special folks, indeed.<br />
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<tr><td class="tr-caption" style="text-align: center;"><i>10/13/85 (Looking very "eighties", two-legged and saintly. 😇 )</i></td></tr>
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Sr. Stephen and all the nurses in my life ....you have left lasting footprints on my heart, and the hearts of people everywhere (whether you know it or not!) Thank you all for your dedication to caring for us in our darkest hours, for tending to our troubled minds, restless hearts, and tired, aching bodies. Thank you for being there for us and for choosing to stay when the going gets rough. Believe me, we know the going does get tough. <br />
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<span style="font-size: x-large;"><b>This week and always, truly, <i><span style="font-family: inherit;">WE THANK YOU!</span></i> </b></span><br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8580861204056759106.post-89647095297305891862016-12-01T21:22:00.001-08:002016-12-01T21:30:34.664-08:005 years in Retrospect...Celebrate Life<iframe allowfullscreen="" frameborder="0" height="344" src="https://www.youtube.com/embed/tW6XCQj_474" width="459"></iframe><br />
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Looking back on five years post accident, and grateful for so many people who have helped me to embrace life more fully. Ya'll know who you are. You rock!<br />
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<span style="font-size: x-large;"><i>Gracias.....and CLIMB ON!</i></span>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8580861204056759106.post-58759720597579158032016-05-23T10:39:00.002-07:002016-06-06T06:20:47.055-07:00What having "One foot in the grave" has taught me about Advance Care PlanningOccasionally folks will ask me, "Do you ever miss your foot?" My response is usually something like, "<i>Definitely not my post-accident one....but my pre-accident foot, yes</i>. <i>That one was lost at the time of my accident</i>." In companioning patients in end-stage / end-of-life situations these days, I am reminded of how difficult and arduous the soul-searching can be... to <b>know what to do when a part of you....your loved one, is not coming back in the way they once were. </b> No matter how we look at it, loss is hard. It seems we do all that we can to avoid thinking about it. <br />
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My post-accident ankle brought a lot of pain, heartbreak, and longing for a life I had once loved. Thankfully, amputation provided a better "quality of life" alternative to walking around in this <i>metaphorical middle-world of wishing for the past yet wanting to move on</i>, (and life is different as an amputee, for sure). However, there is an energy that gets all clogged up in a person's psyche when feeling stuck, powerless, and in pain. We forget the emotional toll this can take on a person and their support system. Without realizing it, the "suffering person" often feels guilty for not being their "former self" and for "bringing people down", despite all efforts for folks to assure them that this is not the case. <br />
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I know a family right now who is going through the arduous process of learning how to let go. Pam has been battling end-stage cancer for six months, and has undergone four hellish years of exhausting all options to treat her progressing disease, which has now invaded her entire body. Like me and like many of us, Pam is tough. She has, as they say, <i>fought the good fight</i>....but she is <i>tired</i>. The family is tired. Everyone is tired. But <i>the energy is stuck</i> in trying to hold on to the physical life she has left rather than celebrating and embracing the amazing spirit she is and offering it back to the universe. <br />
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One thing I have come to know without question is the fact that<i> all of us</i> have a terminal condition. Short of cryogenics becoming a reality (as in the sci-fi thrillers), none of us is making it out of this world alive. It might sound morbid and pessimistic, but there is a freedom in acknowledging this reality earlier rather than later. We have no crystal ball to know when it will be our time to exit this dynamic and beautiful giant green and blue earth marble that we inhabit. Remaining in denial about our eventual demise only serves to stifle the life-energy that we all embody. It's an energy and a spirit that dances and communes with a place beyond the walls of our skin. <br />
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Two years ago while in Florida (getting my first prosthetic leg) I received a phone call from my mother informing me that my dad had suffered a pulmonary embolism. My mom found him non-breathing and unresponsive on the floor and immediately gave him rescue breathing (yay, mom!). Luckily, the clot became dislodged, my dad got to the hospital and was treated promptly. It was truly a "best case scenario." However, as luck would have it, the proverbial genetic canon on my dad's side is fully loaded with cardiac problems. Whether you aspire to the understanding that "life is a crapshoot", the belief that we are part of something greater, that we are all inherently doomed to the underworld, or that aliens will inhabit our bodies at the moment of death, it does behoove each of us to have a discussion about what we would like our final days to look like while we are in our most sane minds, and <i>earlier rather than later</i>. <br />
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Way too often, we have all seen families torn apart by unforeseen challenges which present themselves at the end of life. In these circumstances, people can become literally and figuratively out of their minds, because it can be too tough to handle hard choices when we are still reeling from the trauma of finding out horrible news. <br />
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<b>To begin the discussion....<i>to start talking about these things</i> is <u>enormously important</u>. </b><br />
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While medical technology has progressed by leaps and bounds over the past twenty years, so have medical complexities, and thus, our choices. </b>We do ourselves a disservice by giving away our power to make choices if we don't discuss these issues while we are still able.<br />
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Before my accident, I never would have thought about these kinds of things. "<i>It's depressing</i>," as some of us say. <i>But is doesn't have to be</i>. <br />
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Talk about what you value. Talk about what are the non-negotiables of your life, and what, if projecting forward, you think you could or couldn't handle. Also, know that these things could change... because life is constantly evolving. Be sure to have these things in writing, and have them on-file with your medical professionals. <br />
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Denial can be a horrible thing. <i>But not engaging our brains and our hearts in this very human experience is what makes it horrible</i>. Having a plan in place can be an emotional life-saver.<br />
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If I would have given all of my power over to the medical folks to keep salvaging my leg, I would probably be depressed and drooling all over myself by now. Thankfully, there are medical folks out there who embrace the idea of <i>partnering together in medical care</i> for what is best for us and our loved ones. <b>Embracing the complexity in our lives is a part of the human adventure. Talking about advance planning and decision making for healthcare is a part of that adventure.</b> <br />
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Just DO IT. Then get busy living!<br />
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<i>Advance Care Planning resources to begin the conversation can be found here: </i><br />
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<a href="http://uslwr.com/formslist.shtm">US Living Will Registry</a><br />
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<a href="http://thelastvisit.com/resources/advance-directives/five-wishes-a-planning-tool/">Advance Planning, 5 Wishes</a><br />
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<a href="http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289">http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289</a><br />
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<a href="http://thelastvisit.com/talking-death/">"Talking Death" Discussion Cards</a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8580861204056759106.post-21280639282189011172016-05-06T08:49:00.003-07:002016-05-06T11:15:12.005-07:00REVISIONING STRENGTH. When Life Does Not Go as Planned...One of the advantages of living through a difficult experience is that it sharpens one's awareness of "bigger life issues", and helps one to hone in on relationships, priorities, and things that we consider of a more important value. For a while after my accident, I would regularly think to myself, "hey, I've just earned my 'escape the rat-race' free pass", as matters which once seemed a big deal no longer packed the same punch as they had previously. The other side of that token, I've learned, involves a necessary deep probing into the depths of this life-experience, and discovering that often life does not offer neatly packed reassurances, comfort, or explanations in the midst of our challenges. The life-stories we write for ourselves seldom include acquiring disability, early death of those we love, pain or suffering of any type....and they certainly avoid admitting any type of defeat. Whatever the struggle, <b><i>we rise</i></b> This is the stuff heroes are made of. <br />
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But what<i> does</i> happen when life doesn't unfold as planned? When we are hit full-force by overwhelming difficulty or suffering which reminds us that we are not as in control as we once thought we were? THIS, we tell ourselves, is the stuff reserved for prophets, sages and shamans. We maintain that <b>we are here to rise</b>. To embrace victory...<br />
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The natural world is thankfully a great humbler, as anyone who has had their vacation plans thwarted can attest. Yet we hold on to optimism because it keeps us going. Hope keeps our spirit a-flutter and imbues our life with passion and purpose. It was this same optimism and hope which drove us to book a trip out West this March with the dual plan to backpack the West Rim of Zion National Park (my first such experience as an amputee), and visit with our good friend Dan, who had been courageously battling an aggressive, terminal brain tumor since the previous May.<br />
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Dan and my husband had become friends in the mid 90's, when he worked for the school district of Las Vegas. Scott found a kindred soul in Dan, as a fellow outdoor / nature junkie who had one of the kindest hearts of anyone I knew. He was a gifted artist who loved working with troubled kids. Dan also introduced Scott to the rock climbing community out there, and shared this passion which I grew to embrace as well. Every few years we would make a trip out for a visit, <br />
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and a rag-tag bunch of near-middle age active junkies would meet up at some crag in Red Rock Canyon. Inevitably, we'd have a blast.....an awesome energy abounded.<br />
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This trip would be different for sure. We didn't know how different exactly, until Scott received a text from Dan's wife, Judy, the evening before we left for vacation, informing him that Dan had taken a turn for the worst and was now in hospice care. While waiting to board the plane at Chicago O'Hare, he received a second text from Judy: "<i>Scott, he's gone..</i>."<br />
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We sat in silence, looking at those words and feeling such heavy, heavy loss. We tried to muster up the ambition to get psyched up for a trip on the West Rim at Zion, but neither of us slept well...and by the time we arrived, the road at the trailhead was closed due to snow. Reports for an evening on the rim included slogging through snow and mud, below-freezing temps, and a guaranteed-to-be-miserable trek. Feeling disappointed and down, we opted to camp in the valley and gear down a bit.<br />
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Weather for the following day included strong winds and rain, but we made the best of our time there, with a plan to secure a campsite around Red Rock Canyon outside of Vegas. Driving into the park felt strange, as we realized that the last time we had been there we had taken a fun photo while Dan was healthy and carefree. Our hearts were heavy, and my husband needed to find some kind of <br />
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way to say his final farewell to his good friend. He got a white helium balloon, climbed atop the Red Rock Canyon entrance sign (the same sign we had posed at the previous year), and let the balloon fly into the sky with his sentiments and shared memories. <br />
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Truthfully, it was a tough trip. Emotionally, it felt empty and surreal. We were very grateful to have met up with climbing friends, and to do a little climbing and hiking while in Red Rock Canyon. The weather finally began to cooperate by the last day of our trip. Still, the looming shadow of Dan's death was there, and there was no escaping the feeling of loss. <br />
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Yet knowing Dan, the ever-embracing adventurer that he was, we pressed on. We talked about Dan. <b>We talked about death. Struggle. Disability. Pain. Loss. We tossed around gratitude through these experiences, mixed in with a fair amount cursing for the seeming injustice of it all. </b>We hiked and grumbled, and talked a fair amount about risk. The risk of climbing, of venturing, of loving, and of <b><i>letting go.....</i></b><br />
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<b>And I began to understand strength from a different perspective.</b><br />
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For the years following my accident, I had embraced my inner warrior with a vengeance. I was going to climb back and take life by the horns. This was my duty, I felt....having been given a second chance. <br />
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However, life has a way of putting things in perspective, and losing the life you had planned for yourself has an interesting way of tossing you into a humble tailspin. It's gut wrenching, soul-consuming, heartbreaking and messy. There is no guidebook for helping to climb your way back and finding your life direction. As I companion patients and families through these difficulties through my CPE experience at Meriter Hospital, I share these struggles with nearly everyone I meet. It occurs to me every day that what matters most is not what we achieve, how much money <br />
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we make, how physically strong we are, how many letters we have after our names, races we have won, etc. What matters is the depth of relationships we have with one another, and our willingness to take on this life-adventure....with all of its beauty, messiness and pain.. It also embraces the risk of opening ourselves up to deep, heartbreaking loss. <i>This is where my heart hurts.</i> There is nothing more difficult than loss. There are no helpful platitudes to apply as balm to the soul....our hearts break open and ooze pain, and no emotional bandage can take away that suffering. <br />
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<b>Yet.....This IS THE ESSENCE of the life-adventure.</b> It is risky to love someone so much and to lose them. The more we open ourselves up to joy, wonder and deep connection, the more we subject ourselves to loss and suffering. <b> The greater the summit, the greater the risk. </b>Ask any adventurer though....and they will tell you that the summit <i>and the JOURNEY</i> are ALWAYS worth the risk.<br />
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I am thankful for our friend Dan's presence in our lives. His kind, humble, compassionate heart, youthful vigor, lust for life and amazing friendship will be truly missed. Our hearts continue to hold Dan's family and his wife, Judy close, as we learn more about this new kind of strength required in the adventure which lies ahead. <b>The strength of letting go, and climbing on....</b><br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8580861204056759106.post-48267266137131736432015-11-30T21:50:00.001-08:002015-11-30T21:50:13.489-08:00Four Years...<div class="separator" style="clear: both; text-align: center;">
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I guess you could call this an obligatory post, as it comes on the four-year "trauma-versary" of my climbing fall. I have not posted regularly for a while....but given today's significance, I figured I should. <br />
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It has been a whirlwind, for sure. I have learned so many things and discovered many corners within myself which have made me a stronger, much more stubborn, compassionate, and resilient person. I have met so many amazing people as a result of this journey....and I am grateful for so many things. <br />
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Yet rebuilding with a "new normal" is not without its challenges. We keep on, keeping on. Climbing is a great metaphor, because this is what we do. We forge ahead....climb back onboard, and embrace the struggle. I'm proud of being part of this subset of the population....the<em> survivors</em>. There are a lot of us, for sure. If there is anything I can offer after rising from the ashes, so-to-speak, it is a sense of <strong>hope.</strong> I'm not talking about the Pollyanna sort of hope, and I'm not talking about achieving anything. <strong>The hope I'm referring to resides in our day-to-day relationships with one another and the courage to continue despite the struggle.</strong> As Brene' Brown states in her book <em><strong>Daring Greatly</strong></em>, to be "out in the arena" and unashamed of our vulnerability. <br />
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So....I figured, why not embrace the significance of today by climbing? Truthfully, it was a hard day. I got on a 5.10+ route I had done before and as I neared the top (and the crux) I just sorta shut down. No warning.....the "four year" mark just hit me. Life is different. I'm still adjusting. Yes, I'm still climbing! If there is any way I can throw out there the tenacity to not give up......I'm hurling that into the universe. For everyone embracing challenges in their life right now, I offer the encouragement to breathe, connect, and just....<em>KEEP CLIMBING!</em> <br />
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Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-8580861204056759106.post-41868085470450705802015-10-29T09:30:00.002-07:002015-10-29T09:39:09.268-07:00Stella!!! Proof of the Healing Power of the Outdoors....I haven't posted in a while, but I felt this story was compelling enough to share. It has been a mini-confirmation of knowing first hand, the healing power of the outdoors. <br />
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<span style="font-size: x-large;">So....<strong>Meet Stella.</strong></span><br />
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We call Stella our "old girl". She is 17 years old, missing all but three teeth, is completely declawed (which we hate), and a cranky old lady. She's got a little tumor / cyst on her leg, is very inquisitive,and is quite the talker. In fact, she has been known to say such words as "Mama" and "Elmo", and will actually answer us when we speak to her in conversation. </div>
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A couple of months ago, we thought Stella was dying. She showed all the signs: accidents around the house, not eating or drinking, lacking in energy, lethargy.... all the telltale signs we have seen before with our previous lovely feline, Dylan. We took Stella to the vet (who basically told us she was very old and arthritic, and to have a litter box on every floor), and brought her home. I commented to the family, "I think it might be time for kitty hospice." </div>
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Stella had been an outdoor cat in her toddler years, so she always had a longing to get back into her lifestyle of catting around (pun totally intended). However, for her safety we had kept her indoors, since we live in an area where there are coyotes, raccoons, fox, hawks, and other wildlife who would tear her apart in a heartbeat if given the chance. Since we felt she was nearing the end, we decided we would bring her outside with supervision....to enjoy whatever time she had left. </div>
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Stella loved basking in the sun, with her eyes half-closed and sniffing the breezes. She was totally in her feline geriatric element. We felt we could put Stella on a leash and keep an eye on her, allowing her to soak in the joy of being outside once again. It totally took us by surprise when our toothless, clawless girl <span style="font-size: large;"><em><span style="font-size: small;"><strong>caught a bird! </strong> (Gasp!)</span></em> </span>Luckily, the little swallow was only very stunned and shaken up. Scott took the little feathered friend away from the deck and placed him safely into an abandoned nest in a tree at the edge of the yard. He flew away later, thank god. But Stella? She was quite happy with herself and was now prancing around like a furry little queen. </div>
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And.....<strong>Stella has returned to her vocal, inquisitive, vital (albeit geriatric) feline self. <em>Coincidental?</em> I don't think so. I have seen again and again how folks are imbued by a new sense of purpose and vitality just by getting outdoors.</strong> Since my accident, I personally have felt depression lift and pain lessen when I'm doing my thing.....hiking, climbing, kayaking, or just <em>being</em> outdoors. As always, the greater the scenery, the better. But the sun, the breeze, the elements...they're healing. Our Stella has proven it. </div>
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We don't know how long our old girl will be with us...but we are glad she can enjoy the life-giving power of nature. Now it will just be our job to protect the birds.</div>
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<em>(This post has been brought to you by the "Black Cats Aren't Scary" Society in preparation for the Halloween Holiday.)</em></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8580861204056759106.post-23485830666066965322015-04-22T21:54:00.001-07:002015-04-23T15:23:24.257-07:00It's about the JOURNEY<br />
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Sometimes it's hard to remember that life is a JOURNEY, not a destination, especially in our goal-focused and results-driven world. This year Scott and I celebrated our 10th wedding anniversary. <strong>So much has happened in 10 years!</strong> This year we celebrated by climbing our first multi-pitch (as an amputee) at Red Rock Canyon in NV. It was such a memorable experience.......</div>
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<strong><span style="font-size: large;">Looking back over the past 10 years...... and celebrating!</span></strong></div>
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<tr><td class="tr-caption" style="text-align: center;"><strong>8 Year Wedding Anniversary</strong></td></tr>
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<strong><span style="font-size: large;"><em>10th Wedding Anniversary....Celebration of Survival and </em></span></strong></div>
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<strong><span style="font-size: large;"><em>ADVENTURE</em></span></strong></div>
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<span style="font-size: x-large;"><strong>CLIMB ON!</strong></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8580861204056759106.post-17247619243037985112015-04-17T08:56:00.001-07:002015-04-17T13:56:52.932-07:00Genetics, Prosthetics and Prozac, Oh My!One of the things my mom used to say to me whenever I complained about difficult situations or encountered adversity was "<em>Hey, it builds character!"</em> I used to think....yeah right. <em> Character</em>. That is the consolation prize for falling flat on your butt over and over again, while you watch folks <br />
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around you go about their smiling lives and brag about their achievements (Okay....I'm adding drama here.) Truthfully though....It is times such as this past Monday, as I limped in to see my hairstylist and her saying to me: "My Gosh Chris, it seems like you're living a nightmare that just doesn't end..." that I think, "Oh, wow....things are really pretty stressful in our lives, I guess. Hmmm." <br />
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<strong>We just keep on, keeping on.....don't we?</strong><br />
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I've been working on getting a new leg for the past five months, and it has been frustrating. Why....you ask, has it taken this long? Well....I have these little beings called children. And they have some special needs. Especially my son. He is constantly a challenge. And, I am trying to carve out some kind of career / employment. <em>Kind of</em>.....because it is hard to earn money when you don't know from one day to the next what your walking situation will be, if you'll get a call from school about your son's behavior, or.....the list goes on. Appointments are kind of like a job, actually.....for me, and my kids. Every. week. And they don't stop. <br />
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So I'll say it.....Parenting is hard, and being an amputee is hard...at least right now. <strong> Having any kind of uniquely challenging situation can be tough because it can tend to be all consuming.</strong> I miss having a "typical life" and doing stuff I see other folks doing. <em>But.... at least I'm building character!!!</em> And I'm trying to etch some positive on the situation.....trying to make my contribution by taking on projects that sort of of help people because, well....it keeps me from navel-gazing. Or getting depressed. Those things can wind you up in a bad way (like curled up in the fetal position or staring into space for long periods of time....or worse.). There's nothing heroic or special about it.....it's called self-preservation. We grit our teeth and do what we do to keep forging on.<br />
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On the Saturday before Easter, this happened: <br />
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Yes, my hubby was a stressed-out, distracted driver (thought the woman in front of him was yielding, not stopping.) The situation in our house prior to hitting the road was as follows: Our son was melting down and heel-dragging in a major way. I was having leg issues and wanted to chuck the dang leg across the room. Earlier in the day I read a story about a woman who has been an amputee for four months, and she was running. That's good, I know....but I was feeling sorry for myself because of how a neuroma is keeping me from getting a good socket fit and doing things I love, like running. I was a crabby mess and just wanted things to be easy again....like they used to be (before my accident, before kids). And I took it out on my husband (<em>collective....aw, poor guy.</em>) I yelled and swore about my f '-ing leg, and carried on about my son's behavior sucking us in like a "black hole." As usual, we were running late..... <br />
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Interestingly, the woman who we rear-ended was crying about her stressed out life....how she didn't need this right now, as she has a son at home with special needs (the counselor in me read between the lines....thinking, probably financial struggles, child care issues, that <em>fried </em>feeling that I also knew very well). I wanted to say "<em>I know honey....I know</em>...", but since <strong>we</strong> hit <strong>her</strong>, I wasn't in an appropriate space to offer psychotherapy. I simply thought to myself, Wow....this is kind of like the movie "<a href="https://www.youtube.com/watch?v=durNwe9pL0E&list=PLNZvfMSggtuNmori1fim_D3pLkJfOPXuN"><strong>Crash</strong></a>" in real life. We were all okay. The Jeep, not-so-much. It was a good wake-up call reminding us to take it easy, slow down, and be more "present" in the moment. <br />
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These "issues"....well, they simply morph. In the old days (eg. my early parenting days) I had a belief that we would turn a corner with my kiddo's issues. He would see the light, we would find the perfect medication, teacher, or therapy. The same temptation holds true for being a survivor of trauma... The belief that some healing magic bullet is right around the corner. Nope. Not the case. <br />
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So, we had our annual appointment with the Craniofacial Team at Children's Hospital. Luckily, the folks on the team know us well, and can eyeball our kiddos from a clinical perspective every year. Jade is your typical, happy-go-lucky kid who happens to have a bilateral cleft. Kai....well, he is a can of worms. There is some reason to think that further genetic testing will reveal what is going on with him....why he has so many quirks, odd physical characteristics, delays and behavioral challenges. We will be repeating some neuro-psych testing as well, since the last report was done when Kai was four. AND...we will gear up for a bone-graft surgery in August, continued orthodontic treatment, and behavioral interventions at school. These are times where it really <em>does </em>take a village..... <br />
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We have an IEP in place and are looking forward to a better leg soon. Hopefully. Who ever coined the phrase: <strong><em>When momma ain't happy, ain't nobody happy?</em></strong> Unfortunately that does seem to apply. My husband, bless his heart, does his best.....and we are lucky in that way. We embrace our family oddities and treasure them, believe it or not. Our sense of humor remains intact the majority of the time. (Except the times when I'm throwing my leg across the room.)<br />
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Other parents of kids w/ special needs struggle, and other amputees struggle, and well....everyone has their hard time now and again. <strong> Truly, we ALL need a village!</strong><br />
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<strong>So that character thing.</strong> I guess I've got some equity in the character department. I wish there was a barter system though...... because I'd love to trade character for contentment and peace one of these days. I think I would even settle for boredom. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8580861204056759106.post-84594234722912788862015-04-04T21:18:00.003-07:002015-04-04T21:18:42.425-07:00Telling Our StoriesPart of what prompted this blog post is the publishing of an <a href="http://www.milwaukeemag.com/2015/03/11/still-hanging-on-adaptive-adventures/"><strong>article</strong></a> in <a href="http://www.milwaukeemag.com/2015/03/11/still-hanging-on-adaptive-adventures/"><strong><em>Milwaukee Magazine</em></strong></a> this month about my accident, and how we began an adaptive climbing program with Adaptive <br />
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Adventures in the Milwaukee area. Overall, the article is great....but I struggled to see <em>in print</em>, a comment I made in reference to how my accident happened: “<em>I was really wound up from taking him to medical appointments, you know, signing over my life to take care of [my son], who had some behavioral challenges as well,</em>” Even prior to doing an interview about my experience, I struggled as to how to broach the subject of my parenting challenges and how the reality of the intense stress I felt [parenting a challenging child] led to the judgment error I made almost 3 1/2 years ago. I struggled with the perception that I might have some resentment toward my child, or that my comments might be viewed as blaming, somehow. Nonetheless, I kept coming to the same place understanding in my heart....thinking<strong>, things happened as they did. This is my truth.</strong> <br />
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And thus, over the past 3 1/2 years I have shared some variation of how parenting stress played into my accident, but I have never written about it. At this point I feel I have earned some degree of respect as someone who has weathered struggle....mostly as a survivor of [physical] trauma (and if you can't believe a one-legged mom trying her best, who <em>can</em> you believe, right? ). What continues to occur to me most at this point is how I continue to be a parent of a CHILD who is a survivor of trauma. A child who brought a profound degree of trauma into our home when he joined our family. While I have struggled to make my way back to health from injuries, the scars imprinted on my son's psyche after suffering over two years of horrible orphanage neglect are less easy to recover from. We continue to deal with them every. day. <em>still</em>. I cannot begin to tell you in a single post, how mind-wrackingly, soul-wretchingly difficult it has been to parent our son, who suffers from a laundry-list of issues (Developmental Trauma / <a href="http://emedicine.medscape.com/article/915447-overview">Reactive Attachment Disorder (RAD)</a>, <a href="https://www.autismspeaks.org/what-autism/pdd-nos">PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified) </a>, ADHD, Speech and Language Disorder, and others). It is tempting to think, "Why wouldn't we be the perfect parents to parent a challenging child? We have backgrounds in mental health / counseling, psychology and education....you'd think the match would be perfect, right?" Um.... Realistically, the daily grind of parenting a child whose life-goal has been to <em>keep </em>from attaching, to<em> prove</em> how unlovable he is, and whose brain is still stuck in survival mode 75 percent of the time is very taxing on a mother and a family. All sugar-coating aside....every day is a struggle. I am at the stage (call it maturity) where I don't care about impressing others with a Susie-Homemaker mommy image or a need to prove something. I was and am a struggling mom...with a child with special needs....in a family trying to do our best. I am also parenting with a disability, which makes life quite interesting. One of the good things that comes out of surviving something tough is that it helps keep things in perspective while peppering one with a good dose of grit.<br />
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<strong><span style="font-size: x-large;">"That" day...</span></strong><br />
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People will often ask what came into my mind at the moment of my fall. Truthfully, after the initial "oh shit" moment and self-berating over the "stupid" mistake of not clipping in, as I laid on the floor I lamented over and over to the gym manager how stressed out I had been to the point of being completely fried. Over and over again, I said "<em>you have no idea how stressed out I have been. Oh my god...I can't believe I did this. I have been so, so stressed in parenting this kid</em>." The day had been packed with appointments, my kiddo had just had his three-hour long in-home ABA (autism) therapy that morning, and I thought I'd squeeze in an hour or so of climbing before another appointment with the developmental specialist. Yes, I had been horribly injured, but my mind immediately raced to all of the all of the responsibilities I needed to reschedule. I never lost consciousness....in fact, I could give the phone numbers of places needing to be called to the gym staff, while still in shock. It wasn't until I was safely strapped into the ambulance on an IV drip of dilaudid that I could take a deep breath and tell myself: <em> "Okay....this is your wake-up call. Now you're gonna NEED to take care of YOU." </em><br />
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After all of the ugly stuff that went on in the ER and I was wheeled up to my hospital room, I verbalized to the nursing staff that it felt good to finally, <em>finally</em> have some peace. Obviously, because I had these bad injuries I did not even feel guilty this time. (guilt is another bad habit we moms of kids with special needs pick up). While I had been on perennial auto-pilot and constant worry-mode about my son (in trauma-language this state would be called <a href="http://ptsd.about.com/od/glossary/g/hypervigilance.htm"><strong>hypervigilance</strong></a> [Here is a good article on that: <a href="http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/"><em>Autism Moms Have Stress Similar to Combat Soldiers</em></a>. ), I realized that I had now been forced into a situation where I needed to confront this reality. Luckily (yes, luckily) I would be going home to a hospital bed in the living room, and a competent group of therapists from Easter Seals would continue to work with my son. In addition, family would be needing to step up to the plate and help out as well, which gave everyone a taste of what it was like to deal with the challenging behaviors of my kiddo on a first-hand basis. <br />
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<strong><span style="font-size: x-large;">Present-Day</span></strong><br />
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Perspective is a good thing, and sometimes the enduring of a life-changing experience gives a person a kind of permission, or authority, if you will, to be taken with a bit of seriousness. My hope is that by sharing my story, folks will begin to understand just how difficult it can be for parents who take care of children with special needs, and how our lives are affected. As a parent who sits on an advisory committee at Children's Hospital of WI, one of my main goals has been to champion the need for more <em>emotional </em>parent support. (Emotional support, peer support, or anything which is not "medical" per-se, does not receive nearly enough funding or attention. Apparently, specialists can medicate and treat our children and the parents will magically patch themselves together somehow.) It has taken a horrible accident to be able to speak honestly about this, and to be at a point where I can truthfully admit these struggles. (Parenting a child with <a href="http://emedicine.medscape.com/article/915447-overview">attachment challenges</a> and a history of trauma / neglect is a topic worthy of its own post, for sure.)<br />
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There have been several learnings over the past few years..... <br />
<ul>
<li>Self-care is not an OPTION. It is a NECESSITY. </li>
<li>Remaining ACTIVE is healing for the body and the soul.</li>
<li>We NEED each other, and we need to stop pretending that we've got it all together...because let's face it, none of us do. </li>
<li>I needed (and maybe WE need) to stop feeling as if I am / we are not doing enough....for our children, for our jobs, etc., and replace that feeling with self compassion.</li>
<li>There is power in finding and embracing your truth and your passion.....which can be used to ignite new ideas..</li>
<li>It is very important to refrain from judgment, and try to embrace the belief that we all do our best, given the circumstances within which we find ourselves. We need to be compassionate with others as well as ourselves.</li>
<li><strong>Our stories are powerful, and no one should be ashamed of their story / their truth.</strong></li>
</ul>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8580861204056759106.post-44000258458519273662015-01-09T21:55:00.002-08:002015-01-09T22:08:48.614-08:00One Year "Ampu-versary" and Looking Ahead...It occurred to me earlier in the day (once I realized the date) that today marks exactly one year since my amputation. What a year it has been!<br />
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<tr><td class="tr-caption" style="text-align: center;"><em>Life as an amputee.....each day brings a new and </em><br />
<em>different challenge!</em> </td></tr>
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The year has had its ups and downs for sure, and while it has been filled with frustrations, excitement, learnings, grieving, and constantly morphing expectations, it has also been a rich year packed with some wonderful experiences. While one year ago I had envisioned that I would be crushing life's obstacles along the way by forging ahead in this new "amputee" reality, it has really become more of a gradual embracing of what life really is......<br />
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As always, there is an<em> ideal</em> as well as the <em>real</em>. There are things which we strive for and realities we learn to accept.....and sometimes, coming to terms with reconciling these can be challenging. Keeping this in mind, these are my <strong>goals for the new year</strong>: <br />
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<span style="font-size: large;"><strong>To be Gentle</strong>.</span> I have strongly considered getting a tattoo under my collarbone reading the simple words: <strong> </strong><em><strong>Let It Be</strong>. </em> One thing I have learned from healing from trauma and adjusting to life as an amputee, is that the human body has a way of healing itself on its own timeline. I tend to get stubborn and judge myself harshly if I'm not able to meet the goals I set for myself as quickly or easily as I had envisioned. Having grown up a competitive athlete, this is a tough pill to choke down because I had always thought that hard work and dedication generally win out in the end. While that IS often the case, there is no way I can force my leg to <em>not</em> change shape (affecting socket-fit and comfort...expected in the first year or two), or to deny that I've got some nerve damage that is permanent and long-lasting. At this stage of the game, my driven nature <em>sometimes</em> does not serve me well.....I'm much better off listening to my body and laying off of the self-judgment (easier said than done.). Of course, stubbornness is still my default-mode (probably always will be, dang it!) <br />
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<strong><span style="font-size: large;">To Seek Deep, Abiding Joy</span></strong>. When dealing with stuff that can get stressful quickly and easily (such as behavioral challenges with my kiddos, a socket that is fitting sub-optimally, or persistent back pain), finding deep, abiding joy is<em> hugely important</em>. These moments can be found in shared heartfelt conversations, rich and meaningful experiences with friends and family, getting crazy and silly with my hubby and kids, connecting on a "soul" level with those who really "get" you, or laughing with someone so hard that you pee in your pants. For me, it has meant finding my tribe and embracing the understanding that life with a disability CAN really suck, but it can also be beautiful, rich and deep......and yes, extremely FUN too!<br />
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<span style="font-size: large;"><strong>To bring hope.</strong></span> I know it sounds moralistic and simple, but<strong> the concept of hope is delicate and powerful at the same time.</strong> I remember clinging to stories shared with me by others who had gone through very difficult circumstances, and these stories were like manna from heaven. They stayed with me even during really painful, challenging times, or days when I wanted to give up. <br />
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The most therapeutic experiences for me the past few years have been getting to know other "survivors," through the adaptive climbing program we've started, and the trauma survivor peer support program we are creating at Froedtert Hospital. It is POWERFUL to be with people who you know <em>KNOW</em> struggle.....To share in the experience of their getting up on the rock / wall, <em>climbing</em>....perhaps doing something they never believed they would ever be able to do. <strong>To give folks an experience of embracing life fully and doing something that feels <em>amazing</em>....<em>THAT</em> to me, is sharing hope.</strong> Every night we have a climbing program, I leave feeling exhilirated and empowered from hearing the stories of others.<br />
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When people are newly injured and grasping for any last shred of reassurance (as I remember all too well), to be able to say, "<em>Look, I know this is reeeally hard. It will be hard. But you WILL get through this....I know you will, and it will be worth it</em>." is a place of great honor and <span style="background-color: white;">priviledge. When I'm having a tough day emotionally or am dragging, connecting with newly injured survivors helps me to remember how far I have come, which is pretty important (it is easy to forget!). It is helpful to know that <strong>we are not alone</strong>, as we look around and are hit smack-in-the-face with how our lives have changed. </span><br />
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<strong><span style="font-size: large;">To keep moving.</span></strong> While this is probably an easy goal to list, the temptation to inactivity is constantly there. I am intimately aware of the propensity toward inertia and depression that is always right around the corner, lurking behind every excuse: "I'm too tired, I'm too sore, my leg isn't fitting well, it is too cold to go out, etc.). It is true that exercise boosts our levels of endorphins, which are our body's natural pain killers. It is also true that movement is one of the best ways to keep arthritis at-bay (one of the natural by-products of lots of orthopedic injuries unfortunately.) So oh yeah, doing whatever I can to keep my mind and body active will continue to be important.<br />
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As 2015 begins, I am thankful for all of the amazing people I have met, the cool experiences I have had, and I look forward to what lies ahead. <br />
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8580861204056759106.post-81806564076061024992014-11-30T22:02:00.002-08:002014-11-30T22:10:14.510-08:00Three YearsEarlier in the day I had to write a check, and when I asked what the date was, it dawned on me.....<em>Wow, today is the third year anniversary of my accident. </em> I think it is a good thing that this particular date did not loom<br />
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<tr><td class="tr-caption" style="text-align: center;"><em>Red Rock Canyon with friends, Nov 30, 2012</em></td></tr>
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over me as it had the first year (I had to plan a trip to NV for that one to keep occupied...and it was great.) Still, November 30th marks an important life change, and I am honoring that today. <br />
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What. a. whirlwind. Seriously. I think I have only come to realize recently that I no longer <em>feel</em> like a "patient" (as I had for over two years). Planning for and recovering from multiple surgeries can really wear on a person and a family. Not that prosthetic adjustments aren't a drag, but the experience is much different....with the added perks of decreased pain when walking, and support from the amputee community.<br />
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Scott and I frequently comment on the increased amount of gray in his hair and sense of tiredness we both feel. Some of that has to do with having kids as "middle-agers", but a great deal of the fatigue also has to do with lingering issues from my accident. It can be tempting to long for the pre- accident body (okay, I do every day), but I try to focus more on what I have gained. <br />
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<strong><span style="font-size: x-large;">A great sense of community</span></strong>. Nothing quite brings people together like sharing struggles and triumphs. And just as I curse a bad leg day or high back pain day, I am reminded of the others who I have met throughout the past three years who are also great warriors in the physical healing journey. We are a tattered bunch, but I've met so many folks who really rock!<br />
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<strong><span style="font-size: large;"><span style="font-size: x-large;">A better handle on priorities</span>.</span></strong> I used to sweat the small stuff. A lot. The things that used to drag me down don't have the grip that they used to. That is an awesome thing. Life is too short to worry about stupid shit. <br />
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<strong><span style="font-size: large;"><span style="font-size: x-large;">A different focus</span>.</span></strong> Kind of like savoring a good meal, I'm trying to savor <em>life experiences</em>. It is a focus on enjoying the<em> journey</em>, with less emphasis on the destination than the rich experience of getting there. This pertains to parenting as well as all kinds of goals, and is a major shift in thinking. (It also feels pretty counter-cultural.)<br />
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<strong><span style="font-size: x-large;">Appreciation.</span></strong> For my family, friends, and the health of my loved ones. For new relationships gained. For the seasons and nature. For my pets (yes, snuggling with a purring kitty is so therapeutic!). For the fact that I live in a place where I don't need to worry about war or where my next meal will come from. For the kindness of people. <br />
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<strong><span style="font-size: x-large;">Cool Opportunities. </span></strong> Because being active, for me, is like breathing, it has been super cool to bring my passion for adventure and climbing to others with physical disabilities. I am enjoying the relationships I am making, and watching the possibilities unfold!<br />
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I saw this a while ago, and it seems pretty simple, but it is very true......<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8580861204056759106.post-81363768214685466872014-10-06T13:52:00.003-07:002014-10-06T13:55:05.049-07:00Keepin' it RealI've been doing a lot of thinking lately about how tempting it can be to view folks with disabilities or physical challenges as victorious, or having somehow "arrived" at a great place despite their struggles and challenges. While I soooo understand this tendency from a personal perspective, I have come to understand that truly, there is another reality that most of us do not see or fully comprehend, which is understandable. We don't want to see pain. We don't want to see struggle. We want the Hollywood version which makes us feel better......... So, the main intention of this post is to stress the importance of keeping it real. <br />
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Let me start by sharing what an <em>incredible summer</em> we had. It was active, and full....and <em><strong>challenging.</strong></em> In many ways I look at how it felt "victorious", but know that it was also very <em>hard</em>. Dealing with a new reality IS hard .....and it is something that I know I am not alone in. <br />
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Behind the smiles, great scenery, and hands in the air, here's what you need to see: I'm tired and sore. <em> I miss the old body.</em> Wearing a prosthetic liner in the summer sucks (I had to literally pour the sweat out more times than I can count.), Crabby kids and hurtin' mommy is not an optimal combination. A "good leg day" is not always guaranteed, and neither is a day without back pain (on a <em>typical </em>day). Trying to enjoy the process of finding the "new normal" is easier said than done.......<strong>but we try.</strong> We keep plugging on, and try to grab a strong hold of the moments of gratitude we find along the way.<br />
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<strong>It is a PRACTICE....cultivating gratitude<em>.</em></strong> The love and kindness of people and the beauty of nature are great strongholds. They help to pull us through and give us fuel to keep going, thank god. <br />
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I was asked to write about my experience in the <a href="http://www.traumasurvivorsnetwork.org/ckeditor_assets/attachments/20/tsnotes_fall_2014.pdf">Trauma Survivor's Network, Fall Newsletter</a>, and you can read that <a href="http://www.traumasurvivorsnetwork.org/ckeditor_assets/attachments/20/tsnotes_fall_2014.pdf"><strong>here.</strong></a> I've had the pleasure of helping to create a peer-support program at Froedtert Hospital and am delighted that it is going well. We have some great volunteers...other survivors who understand what it is like to keep going, despite difficulty. Recently we've received some great feedback from staff and patients there! This always helps to validate the importance of sharing how it is.....and keeping on, keeping on. <br />
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As is usually the case at this time of the year (when the weather starts to turn, and I begin to become more reflective), I found that it would be a good time to put together a <strong>gratitude collage</strong>. This is by no means, exhaustive.....and it will be growing. There are times when I think about how awesome it would be to return to the "old" (pre-accident) me. Then I think about all of the great relationships that have resulted, the amazing people I have met, and the profound experiences I have had....<em>AS A RESULT of my accident.</em> I would not take those back. <br />
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<ul><em><span style="font-size: large;">High-five my warrior-friends...and as always</span></em><strong><span style="font-size: large;">......<em>CLIMB</em></span><em> <span style="font-size: large;">ON!</span></em></strong> <br />
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<span style="font-size: x-large;"><span style="font-family: Georgia, "Times New Roman", serif;"><em>Chris</em></span> </span> </ul>
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Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-8580861204056759106.post-56587618203272603832014-06-19T20:37:00.002-07:002014-06-19T20:59:32.318-07:00The Cool Folks You Meet...A few weeks ago, my daughter asked: "<em>Mommy, is it fun being an amputee?"</em> After chuckling for a moment with a raised eyebrow in utter disbelief that she'd ask such a question, I gathered my thoughts and replied: "Um...I wouldn't exactly call it<em> fun</em>. But I guess there are parts that are: You get to pick out the kind of foot you want, you can pick out cool patterns to laminate into your socket, and oh....we get to meet so many really interesting people." "<em>Yeah....that's what I mean</em>." Jade said... "<em>It's neat to meet all kinds of cool people who do such amazing things</em>." <br />
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So I have pondered that comment frequently......and, when I'm in a space where I'm frustrated for some reason (which happens a lot, believe me) I think about all of the awesome relationships and experiences I am collecting. <strong><em>Pretty damn cool.</em></strong> <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimV6FwxvS5_rdiVvN6zl_erS1HbNQYj1tqv5kFMxUx9d8Kq_3sHH7iNW6y3vmpKex5sDX15CtOLoXcu6bH5b4OolWGuX0wTyT7e4mBqfCfVCbtG2iG1NxCw3aEXtL9b6gUPw3ZiinxcEdd/s1600/amy,+ronnie+and+me.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimV6FwxvS5_rdiVvN6zl_erS1HbNQYj1tqv5kFMxUx9d8Kq_3sHH7iNW6y3vmpKex5sDX15CtOLoXcu6bH5b4OolWGuX0wTyT7e4mBqfCfVCbtG2iG1NxCw3aEXtL9b6gUPw3ZiinxcEdd/s1600/amy,+ronnie+and+me.jpg" height="275" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">DWTS' and snowboarding paralympian, Amy Purdy,<br />
Accomplished para- climber, Ronnie Dickson, and moi.at<br />
Prosthetic and Orthotic Associates</td></tr>
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I am down at <strong>Prosthetic and Orthotic Associates</strong> this week for a new socket (I am the "incredible shrinking woman"....at least in my prosthetic socket.). It just so-happened that <a href="https://www.youtube.com/watch?v=nkKzy_BG3Ds"><strong>Amy Purdy</strong></a> (from Dancing With the Stars) was also here yesterday and today having some adjustments done. We ended up having some cool discussions about keeping a positive attitude, how to walk around on the toes of a swim-foot, and expectations with limb-shrinkage as a BK amputee. She really is quite the lady, with lots of interesting developments on the horizon....one of them, writing a book. The casual atmosphere at POA is great for just sitting around and chatting about all kinds of things, which is really important.</div>
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Ronnie Dickson works at POA as a prosthetist, and is also an awesome climber. He's an AK (above-knee) amputee who I had connected with initially when looking for information about climbing in a prosthesis. As I began to share my various prosthetic frustrations with him, he encouraged me to come to POA because of the incredible work they do in an expedited fashion, as well as their great track-record with highly active and tough-to-fit amputees. When I got to POA and began to meet all of the people, the energy was palpable. Dozens of amputees, all with amazing stories.....some with prosthetics, some crutching or wheeling around, hanging out in the same space just getting to know each other. A "bonus" is the fact that a lot of the prosthetists at POA are themselves, amputees....so they<em> get</em> it. A healthy, good-natured banter abounds, and folks are constantly sharing about how they love their jobs. It's the atmosphere their CEO, Stan has created and fostered....and really works. </div>
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It has been very neat to see a lot of the researching and efforts I put time into while recovering, finally coming to fruition (I was the research-demon on the net while on bedrest! I guess while my body was laid-up, the brain worked overtime). The <a href="http://www.traumasurvivorsnetwork.org/"><strong>Trauma Survivor's Network</strong></a> has partnered with Froedtert Hospital, and a peer support visitation / support program is being implemented. We currently have four very cool survivors of trauma on-board (me being one of them) who will finish up training this summer and launch the program within the month. Pretty exciting! We are starting up a climbing program in partnership with <a href="http://www.adventurerock.com/"><strong>Adventure Rock</strong></a><strong> </strong>and <a href="http://adaptiveadventures.org/event/2014/adaptive-climbing-intro-midwest"><strong>Adaptive Adventures</strong></a>, and will have a climbing wall at the <strong>Milwaukee Adaptive Sports and Recreation Expo</strong> on July 26th. I've connected up with the folks at <a href="http://paradoxsports.org/"><strong>Paradox Sports</strong></a> in CO for some good advice on starting a climbing program in our area as well. We are lucky to have the support of the Director of Clinical Services in the Physical Therapy Dept. at <strong>Carroll University</strong>, who has decided to weave-in the idea of educating her students in the power of using adaptive sports and recreation as part of the rehabilitation process (I had the pleasure of sharing [through the lens of understanding recovery to be a "mind/body/spirit" experience] with her graduate class last month, and will again in the fall.) Luckily, these students will learn first-hand the power of connecting through physical activity and adventure sports. </div>
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<strong>In all of these experiences I have met the most interesting, colorful, fascinating people, and the experience has been so enriching.</strong> </div>
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So, when I grumble about how frustrating it is to have undergone 2+ years of atrophy and various levels of deconditioning, how I miss the ease at which I used to get out of bed in the morning, or how I hate to pour sweat out of my liner (which happens in the summer....pretty gross), I pause to remember that I'm part of an awesome group of soulful survivors, which is pretty cool. </div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8580861204056759106.post-7716759596132360092014-05-31T19:31:00.001-07:002014-05-31T19:31:47.876-07:00Kinda like....another kidWe had reason to recall recently, the <strike>scared shitless</strike> slightly comical situation whereby I had a positive pregnancy test result on the morning of my amputation surgery (pregnancy testing is routine / mandatory for women of child-bearing age prior to surgeries). Thankfully, the test turned out to be a false-positive, but for about an hour....while waiting for confirmation of the blood test....we spoke of mother nature's sick sense of humor. Frequently when asked how we'd feel to be "blessed" with another child, my standard response has been "<em>Our two are kind of a handful...more than enough work for a gimpy mom and two ADHD-inclined parents. So, no thank you. We're good</em>."<br />
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Oddly, over the last couple of weeks it has occurred to me just how much my leg situation IS very <br />
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much like having another child. Yes....a very consuming, energy-draining, high-maintenance and often colicky little turd that acts up at the most inopportune times. <br />
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Take for example, schlepping around the <strong><em>eternal diaper bag</em></strong>. Yup....carrying what I call my leg stash (a bag containing: prosthetic ointment [eg. Desitin], spray bottle of water/alcohol [for donning / doffing the liner], allen wrench [on-the-go foot adjustments], an array of various ply's of socks [volume fluctuations throughout the day...socks are necessary], pieces of moleskin to help with occasional socket trouble-spots, a cloth, and rubber gloves [ointment gets slimy and messy at times, and hand-washing facilities are not always nearby.].) What do we do when our colicky little one needs a changing? Find a bathroom, inconspicuous corner, or out-of-the-way place to take care of business....preferably with the least amount of attention possible. Let's face it, no one likes to witness a foul-smelling diaper change or a leg-ointment application. <br />
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Every morning....the dreaded routines (bottles, formula, diaper changes, etc.) take some time.....and it is time where you wish you could be doing something else, right? The whole leg thing is similar....and while the leg does "mature" (relatively speaking), it will never outgrow this morning / evening ritual or become fully self-sufficient. <br />
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We like to look back on our "pre-children" days, and will frequently comment that we used to be the kind of folks who were punctual. Either we would be a couple minutes early, right on-time, or "fashionably late." Everyone knows that children throw a monkey wrench into the deal, but a colicky stump is something most folks would have no idea about. (....things like sweat, dietary and temperature changes will do it, as well as over-doing it, which I am prone to doing. Guess I'm stubborn.). It is not uncommon for the fam to wait because "mommy has to sock-up" or adjust a fit. <br />
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The oldest child is typically the one to help out with the responsibilities of the new baby in the family, right? Well, I guess Jade has lived up to that one too, as she'll often yell to me from another room, "Mommy, do you want me to bring you your leg?" Luckily we laugh about these oddities. I mean, what kind of parent asks their kids to fetch their body parts anyway? <br />
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While all of these issues amount to being a pain-in-the-arsh at worst, At best, I'm able to walk around, hike, swim, climb and enjoy a much better quality of life. (Running is a longer-term goal) I <br />
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knew that there would be frustrations at the outset and that I should expect a 6-month to one year adjustment period. Thankfully, I think I'm ahead of the curve on this one....which is great. It is nice to know I'm done with medical stuff and moving on with a new normal. </div>
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Yes, I'm nursing this infant-limb which is going through all kids of changes, but life is good. <strong><em>We're moving ahead!</em></strong> </div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8580861204056759106.post-22372939662010952082014-04-21T21:44:00.001-07:002014-10-15T17:05:44.101-07:00The AIT (Amputee in Training) ExperienceWe are entering our second week in Florida as part of our dual purpose trip: Family vacation, and expedited custom leg fitting. It has been an odd balancing act for sure. <br />
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In regard to my prosthetic fitting, I knew that I would be in for a frustrating six months to one year, as all of the amputees I have talked with warned me that it would be an adjustment with fits and starts, peppered with a whole lot of adjustment and increasing doses of patience. I'm not quite sure why I've got this tendency to always believe that through my sheer force of will I will be the exception to those expectations. I can work my butt off, find the right resources, or gut through the difficult transitions more quickly and somehow be spared the ugly realities of the amputee experience. <br />
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Don't get me wrong, for the most part my leg / ankle is pain-free. I have no problems with phantom pain, which can be bothersome and disabling. I have every reason to believe that eventually I will be back to enjoying the active life I love. However honestly, all sugar-coating aside.....the experience has been tough at times.<br />
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<strong> It is <u>Amputee Awareness Month</u>, so I figured why not air some of the dirt that we as amputees experience. Here goes:</strong> <br />
<ul>
<li><strong>Insurance hassles</strong>. It's pretty obvious that folks need working limbs, right? Well, unfortunately prosthetic coverage is one of the areas which falls through the cracks in terms of medical coverage. The<strong><u><span style="color: #cc0000;"> </span></u></strong><a href="http://www.amputee-coalition.org/"><strong><span style="color: #cc0000;">Amputee Coalition of America</span></strong></a> has initiated the Prosthetic Parity Bill, which aims to require fair health insurance access for amputees and provide a standard of care for prosthetic coverage. It would be way cool to sign the petition asking senators and government reps to support this legislation. Click <a href="http://www.amputee-coalition.org/absolutenm/anmviewer.asp?a=1581&z=9"><strong><span style="color: #cc0000;">HERE </span></strong></a>to support this effort, and if you do sign it, I'm sending a cyber-hug from the bottom of my heart on behalf amputees everywhere. This issue is <em>huge</em>.) If you're interested in more advocacy, here's another petition: <a href="http://www.amputee-coalition.org/absolutenm/anmviewer.asp?a=1581&z=9"><strong><span style="color: #cc0000;">Insurance Fairness Act for Amputees</span></strong></a>.</li>
<li><strong>Socket-fitting issues</strong>. Probably one of the most challenging issues for a new amputee, if not THE biggest frustration. I've learned that there is both an art and a science to prosthetic design, and it is critical to have a prosthetic provider which embodies the best practice possible in that regard. The "right touch" combined with dedication and passion are critical in the relationship between patient and prosthetist, and folks are known to travel wherever necessary for that combination of attributes. </li>
<li><strong>Shrinkage</strong>. (No Seinfeld references here!) Within the first year all amputees undergo volume changes to their residual limb, which makes the fitting process a challenge (as well as continued documentation to insurance companies for those changes....see above.)</li>
<li><strong>Skin issues</strong>. Like today. I've got itchy red bumps on the back of my knee, likely due to a combination of having shaven earlier in the week and sweating under my liner. They suck. And its best to air out the leg to avoid aggravating the problem for a day or two, lest we complicate the problem. Usually we hope to figure out the source of the problem (like shaving probably, in my case) and hope that this is part of the "leg adjustment" phase. </li>
<li><strong>Hairy Legs, baby!</strong> Yup.... even in best-case scenarios, the little hair follicles scream "help me....I'm suffocating" under the silicone prosthetic liner. So obviously, taking a razor to emerging hairs becomes even more problematic. At some point I may attempt laser hair removal, but for now I get to be part Sasquatsch. Oooo...sexy, hey?</li>
<li><strong>Sweat happens....</strong>and under the prosthetic liner, sweat becomes trapped. Now consider that I am a 45 year old woman who is on the brink of menopause.....you get the idea. After doing eight miles on the stationary bike a few weeks ago, I was able to gross out my entire family by pouring what appeared to be at least a tablespoon of sweat from my liner. There are some solutions to consider (prescription deodorant, botox, and a specialized absorbent prosthetic sock), but for now I'm trying to see if my limb will just get used to it.</li>
<li>The need to carry a <strong>stash of supplies</strong> (allen-wrench for the necessary emergency foot adjustments, extra prosthetic socks, prosthetic ointment and alcohol wipes, rag and other sundries) at all times. Ah....and don't forget the crutches for "bad leg days." </li>
<li>A <strong>subtle, creeping guilt complex</strong> about all that I'm not able to do, the excess crabbiness which comes from pent up ongoing frustration AND the inability to parent my kids in a more active fashion. We're coming up on 2 1/2 years of "wait and see", so this feeling is not unfamiliar. I just want to feel like a fun, not-so-crabby mom again. I would imagine that these are common feelings among parents who are caught in a similar situation.</li>
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Luckily, this AIT experience is not without its positive aspects! Truthfully, it has been said over and over again that becoming an "amp" is like becoming part of a family. Folks with limb loss obviously "get" one another, and share the experience on a deep level. They can also offer support, guidance, practical tips, and understanding.....often with a twist of good natured humor. (the only problem with the amputee family is that it is expensive....it'll cost an arm and a leg to get in.) <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr5Q-Ioq68Qkzxsvy2YFhjN2CbH2jJQ-sL1GIUjYiaHBzNPYQo8_cpumCRMQ8oi8LV6Glbsd5ekIgR9xBTOYAfMK9IZBE9_qQwizQahgw6elVzlYCNype_8QUr38g4AeyCd4KDUaeV1GZv/s1600/P1020796.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr5Q-Ioq68Qkzxsvy2YFhjN2CbH2jJQ-sL1GIUjYiaHBzNPYQo8_cpumCRMQ8oi8LV6Glbsd5ekIgR9xBTOYAfMK9IZBE9_qQwizQahgw6elVzlYCNype_8QUr38g4AeyCd4KDUaeV1GZv/s1600/P1020796.JPG" height="305" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div align="left">
Ali, Rebecca and I had a great time entertaining folks at Jimmy Johns, </div>
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obviously blending in with the crowd. We drew no attention whatsoever! ;) </div>
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It was awesome to connect with these gals to share laughs as well as</div>
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helpful advice. While Ali and Rebecca are both AK (above-knee) amputees, </div>
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I learned a lot tips from them as the "new amp on the block."</div>
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<tr><td class="tr-caption" style="text-align: center;"><div align="left">
I met Rebecca through a mutual friend in the blogosphere over a year </div>
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ago, and was totally surprised to meet her at<em> Prosthetic and Orthotic Associates</em></div>
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in Orlando. A very cool chance meeting! Rebecca lives in Philadelphia</div>
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and blogs at:: <a href="http://www.my-1000-miles.blogspot.com/"><em><strong>A Thousand Miles</strong></em> </a>. Check it out...she's got an amazing story!</div>
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The experience of peer-support and sharing is really important. I found that it was incredibly uplifting to be able to share experiences, questions, challenges, and concerns....as well as our stories. I am continually amazed by the people I meet with the most amazing stories. (I plan to do another post on this later....so stay tuned!) <br />
<br />
All of the folks at <a href="http://poacfl.com/"><strong><span style="color: #cc0000;">Prosthetic and Orthotic Associates</span></strong></a> have a passion for their work, as well as helping amputees regain an active lifestyle. Folks from all over the world come to POA because of their custom fabrication and incredible team approach to solving prosthetic challenges, which many of us face. The family-like atmosphere and team approach works really well, because "many eyes" looking at a prosthetic fitting issue are better than only one set. What is also very cool is that a lot of folks working at POA are amputees themselves, which have an intimate understanding of the experience. .<br />
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<tr><td class="tr-caption" style="text-align: center;"><div align="left">
I first learned about POA from Ronnie Dickson (pictured here working on my leg.) </div>
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Ronnie is an amazing climber, prosthetist, and above-knee amputee who shares</div>
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a passion for adaptive climbing. He's also an awesome, caring guy with a very cool dog. </div>
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You can learn more about Ronnie here: <a href="http://xt-9.com/ronnie_dickson.html"><span style="color: #990000;">http://xt-9.com/ronnie_dickson.html</span></a>. Ronnie is </div>
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also heading up the National Paraclimbing Competition coming up in July in Atlanta, GA, <br />
which sounds very exciting.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR_dGoLSwpoO3s10wDqk7DT0P46W8zc0OVC81sNDBUBsSnCoemj3XtYxJemKkppa4I1sEQxjHfm2nlDf_tMFcbOD0Er5_feoVJyVA_dKlqbs6qXQdKsb4aopy0lspjHRa6Qy_NOpey8NBx/s1600/P1020793.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR_dGoLSwpoO3s10wDqk7DT0P46W8zc0OVC81sNDBUBsSnCoemj3XtYxJemKkppa4I1sEQxjHfm2nlDf_tMFcbOD0Er5_feoVJyVA_dKlqbs6qXQdKsb4aopy0lspjHRa6Qy_NOpey8NBx/s1600/P1020793.JPG" height="400" width="301" /></a></td></tr>
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Part of my rehab includes gait training on the Alter-G...</div>
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an anti-gravity treadmill. It felt great to be walking with a pretty normal gait </div>
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at 75 percent of my body-weight, and it was cool to be able to watch </div>
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my stride on the monitor.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivNMhx22ozFW-yNrBVYChB3cdg9-MD318i4Ra4UzPmn0A3SOibiSyAwJGNQsDVOOd_xzR9E5xAdwS9c5PPAbepPrrVIPtBXXpPwOhPr_7k7u2vCW67mGFF45BTIznqBH4PWZt-OLXikjfR/s1600/poa+kids.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivNMhx22ozFW-yNrBVYChB3cdg9-MD318i4Ra4UzPmn0A3SOibiSyAwJGNQsDVOOd_xzR9E5xAdwS9c5PPAbepPrrVIPtBXXpPwOhPr_7k7u2vCW67mGFF45BTIznqBH4PWZt-OLXikjfR/s1600/poa+kids.jpg" height="283" width="400" /></a></td></tr>
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POA works with lots of kiddos. Here, Jade and Kai pose for a pic with </div>
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Bella (second from right) and her family. Bella was adopted from the same </div>
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province Kai is from.....and as you can see, she's super-cute!</div>
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We are hoping to move ahead to create my definitive socket within the next couple of days. I have been wearing a series of check-sockets (see-through plastic sockets which are modified through the fitting process to ensure the best fit), and am looking forward to receiving my lighter, carbon-fiber permanent socket once the proper fit has been achieved. I anticipate continued changes throughout the months ahead as my limb matures, but we are definitely off to a great start. </div>
Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-8580861204056759106.post-14821929069698035022014-03-16T20:05:00.002-07:002014-03-16T20:25:02.835-07:00Road Blocks<div class="separator" style="clear: both; text-align: center;">
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I never quite know what to say when folks tell me that I am a strong person or that I am an inspiration. Truthfully, I've known myself for my whole life and do not find myself uniquely strong or inspiring. Conversely, I tend to find myself more as just plain stubborn and determined, with the necessary thrust of human connection, peppered with a lot of grit and some occasional self-pity (okay, a lot of self-pity lately). <br />
<br />
Yeah, this week has been a rough one. While I was forewarned to expect a year of frustration after my amputation, I did not expect that I would be this frustrated, confused and down about the whole thing. It has been challenging to say the least. <br />
<br />
I was really psyched at the beginning of the week to finally be getting my prosthesis....for my "walking day," as it's generally called in the amputee community. While I knew I would encounter some discomfort and mixed feelings, I did NOT know that I would be forced to confront the fallout of my multiple traumatic injuries, as well as how they still impact the way in which my body continues to respond. <br />
<br />
One of the symptoms resulting from my pelvic fracture was a <em>peroneal nerve injury</em>. The <a href="http://www.wheelessonline.com/ortho/peroneal_nerve"><strong><em><span style="color: #e06666;">peroneal nerve </span></em></strong></a>originates at the base of the sacoiliac joint (as part of the sciatic nerve) and runs down the outside of the leg, around the edge of the fibula (outer leg bone), and over the foot, where it ends<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSAkf9f3Y0jjbeR9hn7hbvoO_RGDL5w71VyC7XDCVpnea7dIFwXusMigbpLeht1nuoUyFlY7HHnBr7-hmyjJ_7E9cW0NYHeLlhEdMB0Skhq2WEGc3WQPmVTYAdgc7LMlESkYFb_upJmFeH/s1600/peroneal_leg1%255B1%255D.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSAkf9f3Y0jjbeR9hn7hbvoO_RGDL5w71VyC7XDCVpnea7dIFwXusMigbpLeht1nuoUyFlY7HHnBr7-hmyjJ_7E9cW0NYHeLlhEdMB0Skhq2WEGc3WQPmVTYAdgc7LMlESkYFb_upJmFeH/s1600/peroneal_leg1%255B1%255D.jpg" height="400" width="155" /></a></div>
between the first and second toe. (see pic at the right). When I still had my foot, I could touch between my toes and it would be numb there...which was really no big deal, as I got used to it and it really did not affect me much. I also had, and continue to experience a lingering numbness along the outside of my thigh, which turns into a tingling sensation when I press on the top side of my calf-muscle. Again, no big deal......that is, <em>unless you're trying to fit a prosthetic socket. </em><br />
<br />
Earlier this week while my prosthetist and I were trying to work on getting a comfortable fit in my socket, I felt a shooting pain across the outside of my shin. I pointed to a small lump which seemed to be the culprit.....and was informed that what I have is called a <a href="http://en.wikipedia.org/wiki/Neuroma"><strong><em><span style="color: #e06666;">neuroma</span></em></strong></a>. Neuromas can present quite a challenge when fitting a prosthetic socket, as the pressure put upon them when bearing weight can cause significant pain and cramping. Needless to say, my hopes to be up-and-walking came to a standstill, because at this point the socket is too painful to wear. On Monday we are going to start over with a new check-socket and see if it is possible to make a few adjustments to accommodate the neuroma. If it still continues to be problematic despite multiple attempts at socket corrections, steroid injections can be attempted, as well as surgery to transect and bury the neuroma deeper into the muscle tissue closer to the bone. Obviously, the last thing I want is another surgery.....so fingers are crossed that we find a better solution. <br />
<br />
I guess that this is where I am humbled and reminded that <em>the human body has its own logic, and no sheer force of will can change that.</em> I have been pretty concerned and worried....as I've obviously been looking forward to getting my life back. It is sometimes hard to trust when one experiences setback after setback, or to catastrophize and think that I'll never be walking again. So I try to get scrappy and educate myself about all of my options, as well as connect with others who share similar struggles. Still, there are days where it is just plain hard. <br />
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<strong><span style="font-size: large;">Still Searching for "Normal"</span></strong><br />
<strong><span style="font-size: large;"></span></strong><br />
I think the most difficult part of this experience is the length of time it is taking to regain some sense of normalcy. I want so much to be in a good head-space for my kids and family, but find myself feeling sad as I sit back and watch them participating in the fun stuff I would love to be doing. I also find that my patience is lacking, as well as the joy I used to feel on a regular basis as a very active person. I guess my energy tank is running on low, and the long hard winter has compounded the arduousness of the journey. Usually at this time of the year we would be making plans to camp, hike and travel....as the snow melts away and we prepare for increased time spent outdoors. Unfortunately at this juncture we are unable to plan with much certainty, which is tough. Luckily, my tough German temperament pushes me onward....as I kick myself in the butt to stay as active as I can be, and surrounded by good people. I try to find joy in the small things, such as richness of conversation with friends, holding my kids on my lap, watching the birds come to our feeder, getting in a good swim, or listening to my cat purr as I scratch him under the chin. (I do this to my husband too sometimes, but he doesn't purr....).<br />
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<em>Somewhere in the back of my mind I know that this will not last forever</em>. And I look around to see all that I have been blessed with. I am thankful that through all of this, my children are learning how to be helpful, how to be compassionate, and how to press on through difficulty. Of course, they are also learning new skills, such as how to throw their snow-covered clothes into the dryer and how to empty the dishwasher! I look forward to some exciting goals on the horizon.....and try to embrace the understanding that these things happen in their own time, which may be outside of my <br />
control. (I can be <em>so</em> impatient!)<br />
<br />
....and we continue taking things <em><strong>one. day. at. a. time.</strong></em> Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-8580861204056759106.post-66230633490447170432014-03-12T20:50:00.000-07:002014-03-31T08:54:14.379-07:00Live Woman Walkin' (well, sort of)Today I received my check socket and took my first steps in a prosthesis. All of the amputees I've talked to have mentioned the fitting process as being the most frustrating part of the experience. We spent three hours working on trying to get the fit right.....and this process is likely to continue for several months.<br />
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At this point I am able to walk for a very short while, and still have some pain in the anterior part of my tibia (bottom of my shin bone). We will continue to work on this (ie., I will communicate my experience w/ my prosthetist and he will make needed changes).<br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dzvYNmd4OPLIJLY_8j6IObK9y14L1yqeuopSyJPqoJtC-zSXf4HqjFe4p1P1svmc1bX1iJ-TWqMUcSsqas0iw' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
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<em>(The video above was taken after some modifications, including a change-out of the foot.)</em></div>
<strong><span style="font-size: x-large;"><em><span style="font-size: large;">I guess this is how it goes</span>....one step at a time.</em></span></strong> <br />
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<span style="font-size: large;"><strong>Patience grasshopper.............</strong></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8580861204056759106.post-60183033011808017202014-03-10T14:48:00.000-07:002014-03-10T14:58:48.346-07:00A Day In The Life: Update #4Haven't updated in a while.....seems I've had a case of good old-fashion writer's block. There's probably a good reason behind that. I've been doing a lot of hanging out and waiting, which honestly has been pretty boring. Admittedly, life has been quite different being Madame Gimpsalot...sans leg until hopefully later this week.... <br />
<br />
...Hence, I thought I'd write about a typical<strong> "day in the life."</strong> <br />
<br />
As I am awakened at 7:00, I am lucky to have my Prince Charming bring a cup of coffee to my bedside. Interestingly, I still dream that I've got all limbs intact and am running around like a kid, so the first brief moments after awakening can be somewhat of a reality-check. It takes a good fifteen minutes for my coffee to kick-in which is pretty necessary as my morning jump-start. Unfortunately I can't hop around with my hot coffee in-hand, so after I slurp it down, I ask one of my little hoodlums to bring my cup down to the kitchen...where I get on my knee scooter to ready the kids for school while gulping down cup #2.<br />
<br />
While the knee scooter is better than crutches, it is still a pain. I've run over my cats' tails more than once, as well as my kids' backpacks, jackets and mittens as they lay scattered across the kitchen floor. And forget about doing anything quickly.....something as easy as last-minute homework folder retrieval from the living room couch can be quite an ordeal. <br />
<br />
Initially I used crutches up and down the stairs, but now I four-wheel it. Much quicker, although I've earned a seemingly permanent rug burn on my right knee as a result. Getting around in this way is strangely akin to climbing, believe it or not, as I continuously scan my environment for "holds" to grab on to to transition from standing to kneeling or sitting, and vice-versa. <br />
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<strong><span style="font-size: x-large;">Maybe no one will notice???</span></strong><br />
I need to admit it is very tempting to avoid going out in public sans-leg. The attention is weird and I prefer to avoid it. However, those who know me well know how much I abhor being inactive. <strong> I've needed to swallow my pride, suck-it-up and get my gimpy butt to the gym...regardless of how much I hate the gawking.</strong> Without fail, I always feel so much more alive after pushing myself and getting in a good swim (...and I'm slowly figuring out how not to swim in circles! :) ). <br />
<br />
Of course, people are very curious and full of questions. The hardest ones to answer are probably the questions where folks don't know my history but are really curious. Those obviously take a longer time to answer and I need to do a fair amount of educating. Heck, I never knew that some fractured bones don't heal well, so how would other people know? Most of us believe that bones heal by simply slapping on a cast for a while....and suddenly voila, all better, right? <br />
<br />
....And while I'm okay with this amputation thing (really...it is so much easier than hauling around a painful, useless ankle), I find a lot of people are sad and perplexed about it. Oddly, I need to do a fair amount of consoling to those who don't understand how a person would "choose" amputation.....and usually this is done by raving about the advances in the prosthetic industry. Pointing to examples of accomplished amputee athletes usually does the trick. <br />
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Speaking of prosthetics, my fingers are crossed that this Wednesday will be my <em>"walking day."</em> I was casted last Friday for the fabrication of my check-socket (a temporary socket which can be modified as my limb changes shape and / or atrophies). I have a fair amount of volume in my residual limb (the PC version of "stump," although most amputees are quite comfortable w/ the word. I find "stump" to be a tad masculine sounding, and prefer to use <em>stumpette. </em>Lol.<em>.. :) </em>). The remaining musculature in the distal end tends to be larger than is typical, making"doffing" (taking off of) the prosthesis a potential challenge. We will know on Wednesday if this is an issue or not. If it is, my prosthetist has an idea or two.....but that might delay things a bit. <br />
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I've known from the advice of other amputees to expect lots of frustrations and challenges, so this is not surprising. Of course, we always hope to be surprised that things go more smoothly than planned, don't we? </div>
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I continue keep in mind that this experience beats additional trial-and-error surgeries, and that I am <em>still</em> much closer to being able to run around with my kids than I would have been, had I continued to keep trying to fix the dang thing. With the weather steadily improving, I am still hopeful that I'll be up and walking by the end of the month. (I'll need to put running off for a bit....just trying to be realistic.)</div>
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About a year ago I read the book <a href="http://www.amazon.com/Daring-Greatly-Courage-Vulnerable-Transforms/dp/1592407331"><strong><span style="color: #e06666;">Daring Greatly</span></strong></a>, by Brene' Brown, which is based on the following quote from Theodore Roosevelt's speech:</div>
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<strong><span style="font-size: x-large;"><span style="font-size: large;"><u>THE MAN IN THE ARENA</u></span></span></strong> Exerpt from <em>"Citizenship In A Republic</em>" delivered at the Sorbonne, in Paris, France on April 23, 1910. </div>
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<span align="justify" style="font-size: medium;"> <em><strong>It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. </strong></em></span><strong> </strong></div>
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<strong><span align="justify" style="font-size: medium;"><em>The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, </em></span> </strong></div>
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<strong><span align="justify" style="font-size: medium;"><em>because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; </em></span> </strong></blockquote>
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<span align="justify" style="font-size: medium;"><em><strong>who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly.</strong></em></span></blockquote>
In truth, it has felt like nearly 2 1/2 years of daring greatly, with a rollercoaster of surgeries and recoveries behind me. It has been so tempting to look for excuses (It's too cold, I don't want people to stare, I'm too tired, etc.), but I have tried to keep my head held high and continue forging on...sometimes, while gritting my teeth or ending the day in a lump of exhaustion. <br />
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At present, I'm feeling oddly like a penned-up horse waiting for the gates to open. It has been a very, very long time since I have walked or run without significant pain and effort. <strong> I am excited to move into this next chapter, as the snow melts away and we begin to embrace growth and new life......</strong> <strong> I'm more than ready.</strong><br />
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<span style="font-size: x-large;"><strong>BRING IT ON!</strong></span></div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8580861204056759106.post-28913907897784005922014-02-13T15:04:00.004-08:002014-02-16T19:44:40.611-08:00S0....what do they DO with the limb? (more interesting little-known facts)Believe it or not, folks in my type of situation (undergoing what is typically called "delayed" or "elective" amputation) have the luxury and freedom of exercising some ownership over what happens with our amputated body part(s). Conversely, when people undergo amputation after initial trauma (when timing is of-the-essence), where there is an infection or suspicion of contamination, the protocol is to send the entire limb directly to pathology before it goes to the incinerator.<br />
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I never really thought about it....(where amputated limbs go) until looking into this whole ordeal myself. Trust me, it is a very strange experience.<br />
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At first I asked my little piggies which market they would like to go to, but none of them could agree on the same place. Of course, the biggest one <em>wanted </em>to go to the market, but, as typical second siblings can be, the next really wanted to stay home. After much deliberation I eventually came to an executive decision for all of them...but this required a lot of research on my part. I tended to side with piggie #2 initially, but unfortunately, the prospects for bringing them home were not optimal.. <br />
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Our needing to travel was probably the biggest hurdle in attempting to come to a good plan for keeping the pigs, and I did believe it was pretty important for them to stay together. (they're very connected and have always been extremely close....sometimes needing to endure extreme conditions that stunk, literally.) Still, I learned that bringing them home would be a challenge...sigh.<br />
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<strong><u><span style="font-size: large;">Option #1: <em>Crematamous de Parte</em></span></u></strong><br />
I did know of two women who decided to have their limbs cremated after their amputations. This required some leg-work beforehand (no pun intended), eg., hooking up with a crematorium, settling on a cost, having the limb delivered, picking out a receptacle / vase, etc. One woman shared that she needed to do some haggling over the cost, as a basic "human body" cremation typically runs around $2000. Eventually the haggling came down to weight in lbs., and an amount was settled upon based on the weight of a 12 lb pet (coming to about $285). Still, running (or limping) around haggling with funeral-dudes did not thrill me. Neither did the prospect of keeping a vase of foot ashes on my dresser or the mantle. <br />
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<strong><span style="font-size: large;"><u>Option #2: <em>PediMortis</em> vs. <em>Appendigeous Insectus</em></u> </span></strong><br />
In discussion with the office staff prior to my surgery, I learned that there have been times when folks were given their amputated bones back.....completely intact after the soft-tissues were gotten off somehow (I wasn't sure how this was done.) <em>Really??</em> I asked....."<em>So I can take my leg/foot home with me, bones and all? From a curiosity perspective that would be really cool</em>." Yup....sure enough, I was told that I would basically need to inform the medical team of my desire to have the bones back, and that there would be some paperwork to fill out after the surgery. I became excited about this possibility, mainly to see just how messed up my ankle was from a three-dimensional perspective (and it sounded more attractive than cremation). <br />
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So on the morning of my surgery I brought this up ....and the Physician Assistant affirmed that lots of folks have taken home their amputated limbs. "You can take the whole thing home if you want." She said. "<em>What?" </em>I asked<em>... " Really...the whole ankle/foot....with the skin, bones, and all? You're serious? What do people do with them?"</em> "They mainly store them in the freezer and stuff." She answered. "<em>Wow...."</em> I replied, "<em>I bet that would totally freak out the airport security folks when they check my suitcase! Mmmm, probably not the best idea</em>." We agreed. <em> Although frequently I stop to wonder if we might have had a total blast with the idea of flying my decomposing leg home in a suitcase. (My Criminal Minds / CSI friends will appreciate this sentiment).</em> <br />
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I then mentioned the comment from the office staff, and asked about the possibility of getting my <br />
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bones back. The PA said "Oh yeah....we have a place called <a href="http://www.skullcleaning.com/"><strong><span style="color: #a64d79;">Skulls Unlimited</span></strong></a> which can do that for you if you'd like. I've even seen one guy have his foot mounted." "<em>Mounted?"</em> I asked....<em>as in taxidermy mounted?</em>" "Yup....." (I pictured my Uncle Bob's deer heads hanging on the wall, but with a foot hanging there instead.) "<em>Uh</em>....<em>I wouldn't want to mount my foot....that's just strange. Maybe I'll just keep it as the skeletal foot</em>." We then obtained the paperwork and website address to <a href="https://www.skullsunlimited.com/"><span style="color: #a64d79;">Skulls Unlimited</span></a>, and called them to obtain more information.</div>
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In the phone call, my dear hubby learned all kinds of interesting things. These people really love their work and go to great lengths to discuss what they do. Apparently, the process we had been considering for my limb would entail the unleashing of flesh-eating, <a href="http://www.skullsunlimited.com/record_staff.php?id=17"><strong><span style="color: #a64d79;">Dermestid Beetles</span></strong></a> (no relation to the guys from Liverpool) in a tank of some sort where the little insects would go to town devouring the flesh of my foot for a week or so. From what I hear they do a damn good job cleaning straight down to the bone. (For more info about these little critters, click <a href="http://www.skullsunlimited.com/record_staff.php?id=17"><strong><span style="color: #a64d79;">here</span></strong></a>.) For the small price of $800 we could have my bright and shiny, insect-cleaned, bleached, and reassembled bones shipped right to our home within a two week time frame. Such a deal, hey? <br />
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<u><strong><span style="font-size: large;">Option # 3:</span></strong> <span style="font-size: large;"><strong><em> Limbis Incineramous</em></strong></span></u><br />
Suffice to say, the thought of millions of insects chomping away at my detached limb did not leave me with a good mental image. I've spent many-a-summer avoiding bugs of all types....my piggies were way too ticklish. $800 was a bit steep as well, especially just to entertain my curiosity.<br />
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So in the end we just took the easiest measure.....to incinerate the sucker. To simply leave it up to the good doc and medical folks to send it on its way. <br />
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Before putting our cat Dylan to sleep several years ago, the vet suggested that we could do a fur clipping in memoriam / as a reminder of him (I still have that little baggie in the bottom drawer of my jewelry box.). For a half-second I thought that might just-as-well clip a few toenails from my right foot to keep in there too.....until I realized that this was getting just plain ridiculous. <br />
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<strong>Sometimes the best option is the easiest......to do nothing.</strong> In the end we knew that this limb-o-mine would literally need to bite-the-dust....and functionally, it already had. I now literally have one foot-in-the-grave..... <br />
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.....and my piggies have gone off to the market for good. Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-8580861204056759106.post-17246349854476053622014-01-31T07:45:00.001-08:002014-01-31T07:45:21.951-08:00Update #3Today marks Three weeks since my amputation, and seriously....this is the first day I have sat down in my home and done absolutely nothing. I figured, why not a blog post? The topic: <br />
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<strong><span style="font-size: large;">Interesting little-known facts and info <em>(from my vantage point</em>):</span></strong><br />
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<li> <strong>My toes get cold....yes, the ones that are not there!</strong> Truthfully, it does feel as if the toes on my right foot are still there, sharing the love of our cold winters with the toes of my left, intact foot. AND, since there is less surgical pain now, I am starting to wiggle those invisible toes of mine.</li>
<li> <strong>Phantom pain....happens.</strong> This has decreased significantly since the first week post-amputation, when I felt as if someone was squeezing my pinky toe with a pliers. Other sensations would include feeling as if a lighter is burning under my toes, and having an itch on the sole of my foot that I can't scratch. Luckily, these sensations have been short in duration (usually lasting fewer than 20 seconds.) Now the most common sensation tends to be a buzzing feeling in my foot which can get annoying, but is not painful. I continue to sleep well and symptoms usually do not keep me awake (this can be a problem for some amputees.)</li>
<li><strong>People DO stare.</strong> <strong> <em>And that is okay.</em></strong> I know people are curious.....and <em>I would be curious too if I were them.</em> While we were grocery shopping the other day my daughter noticed that people were staring (I was oblivious). I asked her if she was embarrassed....she said "No. It's kinda fun actually." (Jade had fun pushing me in the wheelchair....which we take when we travel outside of the house. Too much snow and ice here in WI to take chances with crutches!) </li>
<li><strong>I kind of like my stumpy little limb</strong>. That might sound really weird, but from a [body] system perspective, it is like the part that requires a little extra TLC.....a massage several times a day, special attention to acknowledge when to rest, etc. Quirky....I know. I guess you could say that we're getting to know each other.</li>
<li><strong>Not all amputations are created equal. </strong>Every amputee's experience is different. It is tempting to lump all amputees into the same category, but truthfully there are HUGE differences based on surgery technique, levels of amputation, and folks' unique situations. I never realized this until I began to talk with other amputees, and lemme tell ya....the amputee world is full of folks with amazing stories! </li>
<li><strong>The new prosthetics are amazing.....but one does not cover all desired activity. Insurance will only cover a single "every day" prosthesis, and other (deemed) "non-necessary" prosthetics usually have to be paid for out-of-pocket. </strong> Insurance expects that that one prosthesis should last for three years, and (not unlike healthcare) bureaucracy is hard to deal with. So, realistically <em>do you know what this means?</em> It means that while most folks look forward to getting a new car every few years or saving for a really cool vacation, we'll be looking forward to getting a <em>new leg</em> so I can continue to run around with my kids. Yes....running prosthetics do run about the same cost as a new car. (While I plan to apply for a grant, these are not guaranteed.) So when you see us driving around in our 2002 rusted out SUV, remember this. </li>
<li><strong>The KNEE.....VERY important.</strong> Recently someone inquired about my situation, and in the conversation, made the comment: "Wow....and I thought my knee replacement was hard." I responded by acknowledging that the knee is a crucial joint, and not being able to use it is much harder than having an ankle injury. If you haven't had any knee issues, envision not being able to kneel or bend that joint when climbing stairs. It's hard. I'm lucky to have a good knee on my injured leg.....which is awesome. Now I just need to protect the knee on my sound side (it is tempting to hop and overcompensation injuries are common.) Furthermore, I have come to know folks who are above-knee amputees......a much more challenging situation in many respects (this touches upon how "not all amputations are created equal.")</li>
<li><strong>The amputee community is awesome.</strong> I learned this early on as I began to research my options. I would venture to guess that what makes the amputee community pretty cool is the visible nature of the disability.....and the absolute need for peer support. There are countless "issues" which arise with amputation, ranging from socket fit, to skin issues, to choice of prosthetic componentry, to coping with limb loss. Whatever a person's concern might be, there is always plentiful information to be found from others who have "been there." A HUGE BONUS is the fact that amputee humor rocks!! </li>
<li><strong>This list is by no means exhaustive. And I would invite others to share their "little known facts!"</strong> </li>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8580861204056759106.post-87372690181966431962014-01-24T18:04:00.003-08:002014-01-24T18:17:50.511-08:00Update #2It has been two hazy-headed weeks since my amputation surgery.....thought an update was in-order. <br />
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Yesterday I had my two-week follow-up appointment with a recommended orthopedic surgeon. He is an older, seasoned fellow who got his start as an orthopedic surgeon working in Vietnam. He took a special interest in my case, since he has seen and performed a lot of amputations in his lifetime. Much to my surprise, as he perused my before and after BKA x-ray images, he shared that he was happy to see that I'd chosen to end the limb-salvage two-year purgatory experience. He noted: "You know, a lot of surgeons view amputation as a kind of failure. I've seen so many people become fixated on saving the limb that they lose sight of its purpose of function-ability...many times it had been lost long ago, but for some reason they don't want to amputate. The prosthetics out there today are amazing....good for you that you found this out early without going through years and years of heartache." I thanked him for his professional opinion, and explained that my experience had taken me to consult with lots of medical folks....some of whom did not share his same impression. He smiled and commented about how medicine has changed over the years, making these decisions much more complicated because of the new technology available. <br />
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<strong>The Upshot:</strong> <em>Everything looks good</em>. I developed a small hematoma (bruise) on the medial side of my incision shortly after the surgery, where my gastrocnemius muscle was pulled under and reattached. Apparently this is quite typical and nothing to worry about (it is just a little red and <br />
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<tr><td class="tr-caption" style="text-align: center;"><strong>My x-ray</strong>: Note bone bridge between tibia and fibula with<br />
bone-graft material, and muscle padding at the end. </td></tr>
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inflamed). The incision looks good and has mostly closed/healed....although the good doc prefers to wait until the hematoma has cleared, as disturbing the tissue could open up an area where infection could set in. <br />
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I've got another appointment in a little over a week <br />
to have the stitches removed. This will mark three weeks post-surgery. Generally if all goes well, folks begin prosthetic fitting with a temporary socket / prosthesis between 6-8 weeks after amputation. (Timing to receive the permanent / definitive prosthesis varies and is greatly dependent upon changes in the residual limb. Obtaining the right fit is critical and it is always best to take plenty of time making sure all of the tweaking is done prior to getting the definitive socket.) <br />
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While leaving my appointment with the orthopedic surgeon, he brimmed like an excited little boy who was proud of something he had learned as he said to his nurse in the hallway , "Hey, I've seen an ertl done by Dr. Ertl. I studied the Ertl procedure a long time ago and had used the technique, but I've never actually seen the outcome of one of these done by one of the guys in the Ertl family." I commented that after talking with a lot of folks, I wanted to be as convinced as possible of the finality of the limb-salvage trial-and-error experience, and in the ability to move on and get my life back.<br />
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<strong>Recovery</strong><br />
Recovering at home has been about as pleasant as one could hope for. Lots of good pain meds, family providing lots of comic relief, wonderful, caring people dropping by and calling, and loving meals prepared and brought over by so many thoughtful, compassionate folks. I have been overwhelmed by all of the support and encouragement that has poured into our home. <br />
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Pain-wise, I've had some post-surgical pain and cramping, as well as some phantom pain....although that has diminished substantially within the past week. (Phantom pain has consisted of feeling like a pinching of my [nonexistent] pinky toe, burning of the front of my [nonexistent] toes, and itching of the bottom of my [nonexistent] foot.) Often I will feel a sort of transitory "buzzing" feeling in what used to be my foot which is a little weird. The most noteworthy sensation in terms of my transition experience (from right limbed person to amputee) has been in my daily typical fingers-to-toes morning stretch. Imagine what happens when you try to point your toes that are no longer there with newly transected, surgically reattached muscle. Yeah....Owwww! I now try to do my morning stretch in a 3/4 body-fashion, in order to avoid major crampage and calf pain. (Dr. Ertl did mention this is also common and that it obviously hurts.) <br />
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<em>I am deeply thankful for all of the encouragement I have received from people as I've shared this journey. Believe it or not, that encouragement helps to fill my tank and keep me going</em>. I hope to be up-and-about by the time the snow melts. (Although here in Wisconsin, that could be as late as May.) <strong>Keep sending good energy!</strong>Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-8580861204056759106.post-51646027086825083822014-01-15T21:21:00.001-08:002014-01-15T21:44:53.504-08:00The Survivor TreeEver have one of those moments where you're overwhelmed by something that speaks to what I call your rightness in the universe? I know....it sounds very Shirley McClain, but as I begin to slow down and pay attention to the richness of <em>moments</em>, I begin to notice things I may have not noticed before. Today, at our visit to the <a href="http://www.oklahomacitynationalmemorial.org/secondary.php?section=1&catid=193"><strong>Oklahoma City Memorial</strong></a>, I was seized by one of such moments.<br />
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Being a survivor of trauma, and visiting a place which embodies the meaning of trauma, I was overcome by emotion as I sat below the <a href="http://www.youtube.com/watch?v=8A-ICA3YE3I"><strong><em>Survivor Tree</em></strong></a>. After withstanding the blast of the bombing in 1995 and burning for several days,<em> this tree still stands as a symbol of human resilience, hope, and rebirth</em>. Despite the 4,000 lb. bomb which killed 168 people and injured hundreds, the tree continued to struggle for survival. With the help of the community, the health of the tree began to improve. Seeds were taken and seedlings were grown. <em>The Survivor Tree</em> has re-birthed hundreds of offspring which serve as reminders of the undeniable life force within us. <br />
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<em><strong><span style="color: #38761d;">The tree continues to thrive....</span></strong></em><br />
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As I began to think of a theme for this blog, I scoured the Internet for images depicting hope and resilience, with a particular focus on the limb, as this has been an element of my grieving and my striving for acceptance. Sadly, no image emerged which seemed to fit. Today as I sat below the tree and looked up, <strong>I found it.</strong> <br />
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There is life after loss. <strong><em>The life-force within us propels us to press on</em></strong> and to nurture each other as we grow.<br />
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Survivors of all types....we know this. The moving on is bittersweet, but it is ripe with possibility. Having risen from the ashes, like this tree, we just keep going.....<strong><em>reaching for the sky</em></strong>. <br />
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As I move forward in my journey with limb loss, I look toward a future of possibility, and a chance to share my passion for adventure with others with disabilities. When faced with significant life-challenges, we can shrink back from life, wither away, or embrace our challenges as unique opportunities for connection. Herein lies my passion.....harnessing hope and connection, and finding meaning in shared life-enhancing experience. How cool is that?<br />
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<em><span style="color: #38761d;">(NOTE: I will do an update on my medical stuff soon! Just needed to get this post out first....the timing was right.)</span></em><br />
Unknownnoreply@blogger.com10tag:blogger.com,1999:blog-8580861204056759106.post-12620037933880217952014-01-10T15:52:00.002-08:002014-01-10T15:59:56.459-08:00Update #1Attempting to do my first update on the blog.....head is a little fuzzy but we'll give it a good ol' try. <br />
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Yesterday I underwent an osteomyoplastic trans-tibial amputation. With the exception of a potential pregnancy scare (false positive in the urine test) the procedure and recovery was uneventful. Looking back I find that pregnancy scare quite comical....I mean, really? A 45 year old lady in for an amputation...pregnant?!? <br />
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<strong>How did it feel to wake up and see the leg gone? </strong> <em><strong>Surprisingly, very good.</strong></em> The day before was spent meeting w/ Dr. Ertl and the rehab team to discuss my goals and expectations, and they're all of the mindset that amputation is the beginning of an exciting rehabilitation journey. A journey which will hopefully lead to getting me back to doing the things I love. <br />
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Through talking with the team, I learned that <a href="http://www.oumedicine.com/department-of-orthopedic-surgery-and-rehabilitation/general-program-info/faculty/william-j-j-ertl-md">Dr. Ertl </a>actually developed and fine-tuned his surgical approach in consultation with a fine prosthetist, <a href="http://www.oumedicine.com/department-of-orthopedic-surgery-and-rehabilitation/general-program-info/faculty/jonathan-d-day-cpo">Jonathan Day</a>. It is important to realize that not many surgeons do that kind of thing. They generally make their decisions through the protocols which they know and are comfortable with. So when a surgeon takes the opportunity to learn from another professional (say....is humble enough to consult), and work collaboratively, good things happen. <br />
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Physiatrist, <a href="http://www.ah.ouhsc.edu/rehab/faculty/dionne.asp">Dr. Carol Dionne </a>is also on the team, and her job is to consider the "whole person" in her approach to recovery. Dr. Dionne has a specialization in spinal injuries, so she was quick to bring up my SI joint fusion, and how this next step will be very beneficial for me to equal out my limb-length discrepancy. The entire team talked about the importance of a good prosthetic leg as it relates to my other orthopedic injuries. <br />
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<strong>What impressed me the most was the sense of camaraderie among the team</strong>, and attitude of excitement for my being active again in ways that I haven't been able to be in over two years.<br />
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<tr><td class="tr-caption" style="text-align: center;"><em>Post-op with Dr. Ertl. He left a nice, 10 in below knee residual limb</em>.</td></tr>
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<em></em>Physically, the experience has not been a walk-in-the-park. I have an epidural right now which helps tremendously with post-op pain. I don't like this epidural, but it is better for pain relief than anything else. I've had a few occasions of breakthrough pain, and have been given a PCA (patient controlled analgesic) pump with dilaudid for those times. <br />
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Our hope is to remove the epidural sometime tomorrow and switch to oral, longer lasting pain medication. Fingers are crossed that goes well!<br />
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What was particularly cool was the fact that the third doctor I had sent my medical records to (at Georgetown University Hospital), called about a half-an-hour before my pre-op assessment. He was happy to hear that I had moved ahead w/ the BKA, and in fact, was recommending that I have the Ertl amputation procedure. (Said he wants to see pics of me "doing my thing" once I'm in a prosthesis. <br />
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Thankfully we were able to Skype with the kiddos and Uncle Matt....so far the house is still standing! <br />
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<strong>Thanks so much for everyone's support and encouragement! It means SO much! </strong></div>
Unknownnoreply@blogger.com10tag:blogger.com,1999:blog-8580861204056759106.post-12321515181566531962014-01-08T21:49:00.000-08:002014-01-08T21:49:32.152-08:00New Chapter...There's a huge relief in the act of letting go, especially for a tough-ol' pit-bull type of woman like me. It is an odd mixture of emotions, I'd say.....somewhere between admitting defeat and ease of being okay with the world. And as I really ponder, I am struck by the fact while that this "okay-ness" has something to do with the knowledge gained with research, confidence in my treatment team, and the resignation which comes from just being plain tired,<strong><em> a greater part of this "okay-ness" comes from the strength and energy I have received from others.</em></strong><br />
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<strong><em> It has been a gift, really</em></strong>....something I never would have imagined needing, as I'd always prided myself in being a strong, independent type. It is tough to admit "dis-ability." I think somehow, our <br />
culture has morphed the concept into a dreaded lot-in-life to be avoided at all cost, as to admit it would equate with throwing-in-the-towel. <br />
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<em><strong>The truth I have found however in coming to embrace this new life I'll be facing, is that the inner drive to overcome, and that drive to keep on, keeping on is amazing.</strong></em> <strong><em> It is a STRENGTH</em></strong>. As I have shared my struggle and this journey, I feel honored to have met so many others overcoming obstacles of all types. There is really something quite sacred about joining together in this space....something which is deeper and more real than anything I have ever experienced in my lifetime until this point. <br />
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<strong>It is with a grateful heart that I'm moving forward with this huge life-change. I am grateful for all those who have also shared how they have risen from the ashes, and have shown me the view from the other side.</strong> </div>
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I know there's a long road ahead, but this is the beginning of a new life, and I've found some great fellow-travelers. I'll be looking for more....there's a lot of life out there to explore!</div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8580861204056759106.post-33194571977252641862014-01-03T07:43:00.004-08:002014-01-03T08:49:26.282-08:00How DO you say "goodbye" to a limb?<div class="separator" style="clear: both; text-align: left;">
<em><strong>They say that the experience of losing a limb is similar to that of losing a family member.</strong></em> When I heard that initially, I was somewhat skeptical, as I wondered just how the comparison could be made between a living, breathing, talking person and a physical extremity / body part. The closer I get to this loss however, the more I understand the comment. </div>
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The longer I think about it, I realize that <em><strong>for me, losing this limb is kind of like losing an estranged spouse.</strong></em> </div>
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I'm hesitant to pull the genetics card (since my kiddos are adopted), but in my pondering recently it has occurred to me that I have sort-of inherited an athletic legacy. My dad is, and was a legend in my hometown for his sports capabilities, and folks will commonly recall that I'm "Randy's daughter".... the guy known for his home-runs, high school football and basketball involvement, and "hall of </div>
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famer" in the city's softball history. In his 70's, the guy<em> still</em> has a mean golf-drive and is the envy of the guys on the golf course. <strong>So</strong>....I guess I realized at an early age, intuitively, that my body and I had a good relationship going. My legs were obviously part of the deal.<br />
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In high school, I did well in track and diving...participating and placing in the state meets. I was fast and could jump....and I had an awesome toe point (something you don't usually think about much unless you're a diver or gymnast,<em> and</em> obviously, when you think about the things you'll lose when you lose a limb.)<br />
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When I met Scott, we shared an interest in sports and the outdoors. We enjoyed being active together and had dreams of being an active family. It was fun coaching my daughter's little tyke<br />
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soccer team and teaching swim lessons at the YMCA. When Kai came along, we began rock climbing as a family (I found it taught our children patience, tenacity, and how to use their bodies to reach a goal. It was / is a particularly good discipline for our son who tends to want to "check out" mentally, as it keeps him focused and in the moment.) Kids are naturally little monkeys and love exploring, so these interests naturally became a big part of our family's activities. We love, love, love the outdoors!<br />
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Since my accident, we have done our best to continue this lust-for-life and adventure.....although <strong><em>watching my family participate in many things without me has torn at my heart.</em></strong> It is amazing how you can really miss an ability once an injury has taken it from you, and <strong><em>sitting on the sidelines is incredibly depressing.</em></strong> Until the last two years, I had really taken for granted all of these abilities, and have come to appreciate some of the smallest, such as<em> walking</em>, the most.<br />
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In less than a week, I will be saying farewell to my right foot. Damn that's hard. But in doing this, I <br />
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know that I'll be able to regain a lot of what I have been missing, and I'll gain a huge, important part of my life back. <br />
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<strong>What<em> are</em> the things we say as we begin to part with something / someone who is a big part of who we are?</strong> <br />
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In my case, looking at this cobbled-together ankle/foot....I say "<em>You're not who you used to be</em>." Truthfully, it has been very much like going through a divorce! :) To this limb, I've said: <em>"You're causing me too much pain. You're holding me back from being the person I know I am and can be. You've changed....and you're never going to be what you were. You WERE awesome! We <u>had</u> a good thing going, you and I."</em> <br />
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But the closest thing I can get to the "me" I know and love...the active "me", is to let go of this bad relationship. It is the equivalent of having spouse who wants to lay around all day and be a couch potato (pain and limited function will do that to a person.) Functionally, prosthetics will offer a huge improvement. That said......<br />
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<strong>There are things I know that I will absolutely miss.</strong> I grew up playing on the shores of Lake Michigan, spending the day in my swimsuit and jumping over the waves. While there are a lot of cool prosthetics that function in awesome ways, (running, climbing, etc.) none can offer the kind of foot that can feel the sand between your toes or run and jump over the waves....yet (I've thought about this a lot, actually....but then realize that <em>realistically</em> I don't do this often anymore anyway.) <br />
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My sister used to give me a hard time about my ugly feet, and my family would laugh about my talented, flexible toes as I'd hold a spoon between them and feed myself (I know...we're a strange family.) Because I'm right-side dominant, my right foot was obviously considered the more talented one. If I had to fall and crush my tibia again, I'd pick the left one. Ah well. <br />
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As one begins to realize any relationship is a total drain, still, the process of moving on is hard. It is not really possible to just "cut it off" and not have that person with you in your heart forever. STILL, sometimes we need to make that cut so we can move on. (<em>Aren't you lovin' the awesome metaphors!?</em>) <br />
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To say "goodbye" to this limb is bittesweet. I think folks who suffer a traumatic amputation are usually left shaken and painfully robbed of a very important part of them...similar to losing a loved one very suddenly. And I assume that that grieving is done very intensely at the time their loss is realized. But for folks like me, this ankle has been more like a painful, aching tumor....and while hope was given throughout the long treatment period through lots of surgeries, hopes, and broken promises, there has also been a prolonged grieving period. <em>A feeling of</em>: " <em><strong>hey, I've already lost it</strong></em>....<strong><em>she's not coming back</em></strong>." (the function-ability of my leg, that is....not my mind!) <strong> </strong><br />
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<strong>Sudden or gradual.....loss is not easy. </strong><br />
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<span style="font-size: x-large;"><strong>....but there<em> is</em> life after loss. </strong><em> I've met dozens and dozens of amazing amputees....all with incredible stories. <strong>They're all back to DOING WHAT THEY LOVE...</strong></em><strong> <em>I want that</em></strong>. <em>I'm <u>psyched</u> to get that....back! <strong>So is my Family....</strong></em></span></div>
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<span style="font-size: large;"><em>....I guess, this is the best way to say farewell....</em></span></div>
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